MODULE MANAGEMENT OF DRUG-RESISTANT TUBERCULOSIS D INFORM PATIENTS ABOUT MDR-TB TRAINING FOR HEALTH FACILITY STAFF IN THE PHILIPPINES MODULE D Management of Drug-Resistant Tuberculosis Training for Health Facility Staff in the Philippines Inform Patients about MDR-TB Acknowledgements National Library of the Philippines Cataloguing in Publication Data Management of Drug-resistant Tuberculosis Training for Health Facility Staff in the Philippines 1) Tuberculosis (Disease) – Multidrug-Resistant Tuberculosis 2) Training Modules ISSN # 2012-2675 Recommended citation: Tropical Disease Foundation and Department of Health, Philippines, 2008. Management of Drug-resistant Tuberculosis Training for Health Facility Staff in the Philippines © Tropical Disease Foundation (TDF) and Department of Health, Philippines (DOH) 2008. All rights reserved. Copying and/or transmitting portions or all of this work without permission, or selling this material or portions of this material for profit, may be a violation of applicable law. The publishers encourage dissemination of these modules and will normally grant permission to reproduce portions of this work. The published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the Tropical Disease Foundation and the Department of Health, Philippines be liable for damages arising from its use. Requests for permission to reproduce, in part or in whole, or to translate the training modules should be addressed to either of the agencies below: Tropical Disease Foundation, Philippine International Center for Tuberculosis, Amorsolo corner Urban Avenue, Makati 1229, Philippines, Fax No. (+63 2) 810 2874; email: [email protected] Center for Infectious and Degenerative Diseases, National Center for Disease Prevention and Control, Department of Health, 3rd Floor, Bldg. 13, San Lazaro Compound, Sta. Cruz, Manila, Philippines, Fax: (632) 711-6804, email: [email protected] Cover and text design: Digix Design Studio / Alexdesigns.ph Printed in the Philippines These training modules for Drug-resistant Tuberculosis will be used by the National TB Program, Infectious Disease Office, National Centers for Disease Prevention and Control, Philippine Department of Health and its partners in the Local Government Units in the integration of the Programmatic MDR-TB Management into the National TB Program. The documents were prepared by the core team of the Programmatic Management of Drug-Resistant TB (PMDT) Program of the Tropical Disease Foundation, Philippines with the technical assistance from the WHO: Ma. Imelda D. Quelapio, MD, PMDT Executive Officer & Program Manager Nona Rachel Mira, RN, MPH, Training Officer Virgil Belen, RN, Nurse Clinical Coordinator Ruth Orillaza-Chi, MD, Medical Clinical Coordinator Albert Angelo L. Concepcion, RN, MHSS, Program Coordinator Nerizza Múñez, RPh, Drugs and Supplies Management Coordinator Grace Egos, RMT, MSPH, Laboratory Manager Thelma E. Tupasi, MD, Program Director Jacob H. Creswell, MPH, WHO Consultant With contributions from: Michael Evangelista, RMT – PMDT Laboratory Coordinator John Stuart Pancho, RN – Training Assistant Roberto Belchez, RN - Field Coordinator Gail de las Alas, RSW, MSSW – Social Worker Coordinator The contributions from the following are also acknowledged: The technical inputs, editorial review and coordination provided by Dr. Michael N. Voniatis, WHO Medical Officer for Stop TB in the Philippines; the guidance provided by Ms. Karin Bergstrom of the Stop TB Department, WHO–HQ, Geneva; the technical support of the Stop TB Unit of the WHO Western Pacific Regional Office (WPRO); the collaboration and support of the technical and managerial staff of the National TB Programme, Department of Health, Philippines, in particular Dr. Rosalind G. Vianzon, National TB Program Manager and Dr. Vivian Lofranco, focal point on MDR-TB at DOH; the Center for Health Development, the National Capital Region, the NTP Coordinators of the local government units in Metro Manila, Philippines, the MDR-TB Treatment Center staff, and other partners. The production of the module is supported by WHO Regional Office for the Western Pacific and WHO Headquarters, with funding from Eli Lilly and the United States Agency for International Development. The opinions expressed herein are those of the authors and do not necessarily reflect the views of the World Health Organization and the donors. Contents Introduction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Objectives of this module. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 1. Use good communication skills . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 1.1 Ask questions and listen. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 1.2 Demonstrate a caring, respectful and friendly attitude . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 1.3 Praise and encourage the patient to attain positive goals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 1.4 Speak clearly and simply . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 1.5 Encourage the patient to ask questions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 1.6 Ask checking questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Exercise A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 2. Inform the patient about the possible diagnosis of MDR-TB and steps to be taken . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Guide for initial patient information about the possible diagnosis of MDR-TB. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 3. Orient the patient on MDR-TB and on the procedures to be done for enrollment after Consilium approval . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Guide for initial patient information at enrollment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Exercise B . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 4. Provide drug education to patient using a flip chart . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Guide for flip chart about MDR-TB drugs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 5. Continue to provide information throughout treatment (subsequent meetings). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 Guide for continuing patient information about MDR-TB. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 6. Provide information about the decentralization process. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 Guide for patient information about decentralization . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 7. Inform MDR-TB patients, family, and contacts about HIV and pregnancy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 42 Guide for informing patients about HIV and Pregnancy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 43 Exercise C . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44 Written Exercise - Problem Solving. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 44 8. Provide education at the end of treatment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 Guide for patient information at the end of treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 Exercise D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 49 Summary of important points . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 Self-assessment questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52 Answers to self-assessment questions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56 Annex A: The Patients’ Charter for Tuberculosis Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 Annex B: Gabay para sa unang pakikipag-usap sa pasyente tungkol sa posibilidad ng pagkakaroon ng MDR-TB. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 Annex C: Script for Video Demonstration Initial patient information about MDR-TB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62 Annex D: Text of MDR-TB Drug Flip Chart. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 66 Inform Patients about MDR-TB 3 4 Inform Patients about MDR-TB Introduction Informing patients and their families about multidrug resistant TB (MDR-TB) is a critical part of treatment. It is very important that MDR-TB patients are given more time and adequate information due to the complexity and long duration of MDR-TB diagnosis and treatment. Health workers must communicate with patients and families clearly and in a supportive way from the time of diagnosis, throughout the long treatment process, until the patient is cured. Providing information to patients and families is part of health education about MDR-TB. In the initial meeting, when a patient is suspected of having MDR-TB, it is necessary to discuss the process of diagnosis and the steps that will be taken. Information on how TB and MDR-TB are spread should be provided so that patients can take the necessary precautions. The patient is oriented on the long process of reaching a diagnosis and the patient is asked to sign an agreement (“Panuntunan”or Terms of Agreement which can be found in Module B: Detect Cases of MDR-TB and in the Reference Booklet ) that signifies his approval to the procedures that will be done for his illness. At the time of diagnosis, patients need basic information about MDR-TB and how they may have gotten it, the difference between TB, drug-resistant TB (DR-TB), MDR-TB and extensively drug-resistant TB (XDR-TB), and how they will be enrolled for treatment. They most likely will be afraid or anxious and need reassurance that MDR-TB and even XDR-TB can be cured if both the patient and the health care worker do their part. The patient and his family need to understand, though, that MDR-TB and most especially XDR-TB are difficult to cure and treatment options are very limited. Before the patient begins treatment, he needs information about each of the drugs he will be taking and he needs an explanation of the treatment process and the necessity of supervised treatment. An informed consent, the “Kasunduan” or Contract is necessary to begin treatment for MDR-TB. In most cases, health workers may have to continuously encourage and reassure patients who think that daily treatment will be too time-consuming and inconvenient. Daily visits for supervised treatment offer many opportunities to provide information. During these visits health workers must be prepared to advise patients about how to handle side effects. At some visits health workers may review information about MDR-TB or give more details about its treatment. At other visits they may explain the need and schedule for follow-up sputum examinations. Most importantly, at every visit health workers need to show a welcoming and supportive attitude so that patients will be willing to return for the next appointment. Inform Patients about MDR-TB 5 MODULE D Objectives of this module Participants will learn to: Refer to section: • Use good communication skills for informing patients 1 • Inform the patient with suspected MDR-TB about the possible diagnosis of MDR-TB and the steps to be taken 2 • Communicate messages for the MDR-TB suspect about MDR-TB and the diagnostic process 2 • Inform the MDR-TB patient and family about MDR-TB, the procedures to be done for enrollment after Consilium approval, and supervised treatment 3 • Communicate messages for the MDR-TB patient and family about MDR-TB, XDR-TB, the procedures to be done for enrollment after Consilium approval, and supervised treatment • Provide information about the drugs the patient will take and side-effects they might cause 4 • Provide information throughout treatment 5 • Provide continuing messages for the MDR-TB patient about the treatment regimen, including the drugs, treatment schedule, side effects, sputum examinations 5 • Provide information to the patient to be decentralized 6 • Communicate messages for the MDR-TB patient about the decentralization process 6 • Communicate messages about HIV and TB, and HIV testing and pregnancy 7 • Provide information to the patient at the end of treatment 8 • Communicate messages for the MDR-TB patient who has finished treatment and will need to come in for follow up examinations. 8 3 If you need to look up an unfamiliar word, refer to the glossary at the end of Module A: Introduction. 6 Inform Patients about MDR-TB MODULE D The following flow chart summarizes the tasks to be performed and the guides that can be used by Treatment Center and Treatment Site staff in informing patients about MDR-TB. Flow chart for informing patients about MDR-TB MDR-TB Suspect Inform the patient about the possible diagnosis of MDR-TB and the steps to be taken GUIDES USED • Guide for initial patient information about the possible diagnosis of MDR-TB Confirmed MDR-TB patient Orient the patient on MDR-TB and on the procedures to be done for enrollment after Consilium approval • Guide for initial patient information at enrollment Provide drug education to patient • Guide for flipchart about MDR-TB drugs Continue to provide information throughout treatment (subsequent meetings) • Guide for continuing patient information about MDR-TB • Guide for informing patients about HIV and MDR-TB Provide information about the decentralization process • Guide for patient information about decentralization Provide education at the end of treatment • Guide for patient information at the end of treatment Inform Patients about MDR-TB 7 MODULE D 1. Use good communication skills Good communication begins when the health worker sees the patient promptly, addresses the patient by name, and offers a comfortable place to sit. It continues as the health worker makes eye contact, speaks in a respectful tone of voice, and encourages the patient to ask questions. Good communication is more than just talking or giving advice. It involves asking questions, listening carefully, trying to understand a patient’s worries or needs, demonstrating a caring attitude, and helping to solve problems. Good communication is not only needed to inform patients of important messages about MDR-TB and its treatment. Good communication is critical to encourage patients to return for the next treatment visit. Surveys have shown that one of the main reasons for defaulting is the attitude of the health worker. Patients who default often report that the health worker was rude, impatient, or seemed too busy to care. With MDR-TB patients this relationship will last two years or more from start to finish. It is vital to the success of MDR-TB treatment when there is harmonious relationship. Every patient deserves to be treated with respect. The table below shows the communication skills and purpose of each skill. The right side of the table shows the purpose of each skill in the context of providing treatment and informing patients. This module will focus on using these communication skills when informing patients about MDR-TB and its treatment. Summary of communication skills Use these skills: In order to: Understand the patient’s medical history 1.1 Ask questions and listen Understand the patient’s current knowledge about MDR-TB Identify and help to solve any problems the patient may have with treatment 1.2 Demonstrate a caring, respectful and friendly attitude 1.3 Praise and encourage the patient 1.4 Speak clearly and simply 1.5 Encourage the patient to ask questions 1.6 Ask checking questions Let the patient feel at home and welcome Motivate the patient to continue treatment Inform the patient (and family) about MDR-TB, XDR-TB and its treatment Ensure that the patient understands and remembers important messages about MDR-TB and treatment Ensure that the patient knows exactly what to do next 1.1 Ask questions and listen Asking questions and listening carefully to the responses are important in communicating with the patient. Different patients may need different information. Rather than giving everyone exactly the same messages, first ask questions to determine what each patient already knows or believes about MDR-TB. As much as possible, ask questions that are open-ended. These are questions that cannot simply be answered by “yes” or “no.” You will usually obtain more information if you ask questions that begin with such words as “What..., Why..., How...and When....” These types of questions require the patient to think about the answer and elaborate. However, sometimes it may be necessary to ask a direct “yes” or “no” question. Listen carefully to each answer. If the patient is slow to respond, do not be tempted to “fill the silence” by suggesting an answer yourself. Let the patient have time to think. 8 Inform Patients about MDR-TB MODULE D Examples of questions to understand the patient’s current knowledge about MDR-TB • • • • • What do you understand about MDR-TB? What do you think the differences are among TB, DR-TB, MDR-TB and XDR-TB? What do you think causes MDR-TB? How about XDR-TB? How is it spread? Have you ever known anyone who had MDR-TB? What happened to that person? What have you heard about curing MDR-TB? Asking these types of questions will help you tailor the messages to the needs of the particular patient. You can build on accurate information that the patient already knows and believes. You can concentrate on giving new information and correcting wrong beliefs. For example, one patient may believe that MDR-TB is caused by “napasma” or “natuyuan ng pawis sa likod” (sweat left to dry on one’s back) or “namana” (inherited), or exposure to paints and fumes. Your initial messages for this patient should focus on the causes of TB and the fact that it can be cured with drugs. Another patient may have much information about MDR-TB but may demand a chest x-ray instead of sputum examinations. The messages for this patient may focus on the need for examining sputum. 1.2 Demonstrate a caring, respectful and friendly attitude The purpose of supervised treatment is not simply to ensure that the patient takes the drugs. Another purpose is to give support to the patient all throughout treatment. The patient is likely to be worried and need a friend. If you have a caring attitude, the patient will be more likely to return each day for treatment. You can demonstrate a caring attitude through your actions, words, tone of voice, and eye contact. Demonstrate a caring attitude from the time that the patient enters the health facility by offering a place to sit and by addressing the patient by name. Attend to the patient as soon as possible, without making the patient wait. You can show respect by remembering that the patient’s time is as valuable as your own. When providing treatment or advice, look directly at the patient. This will help you see signs of concern, fear, or confusion. Speak slowly enough to be understood. Do not rush through instructions. Use a kind tone of voice, and choose words that are caring rather than accusing. Scolding the patient does not help. For example, if a patient misses a day, Do NOT say: “Tila wala ka kahapon. Gusto mo bang magkaroon ng TB ang iyong buong pamilya?” ( “You missed yesterday. Do you want your whole family to catch TB?”) Instead, say: “Wala ka kahapon. Meron bang problema kaya hindi ka nakapunta? Baka may maitutulong kami.” (“We missed you yesterday. What happened that kept you away? We may be able to help.”) Ask about and sympathize with the patient’s problems. Help to find solutions. Solutions may involve talking with the patient’s family or employer, dealing with an adverse drug reaction, finding an alternative treatment site close to the patient’s home, or finding a space that the patient can relocate to that is nearer the treatment site, etc. We are your partners. We will do everything we can to help you finish your treatment. Inform Patients about MDR-TB 9 MODULE D 1.3 Praise and encourage the patient to attain positive goals MDR-TB treatment is a very long process that can last up to two years. In order to motivate the patient to continue treatment, provide praise and encouragement at every visit. Begin by saying, “I’m glad to see you. You are doing the right thing by coming for treatment every day.” Include positive remarks and friendly questions such as: “Natutuwa ako at araw-araw kang umiinom ng iyong mga gamot. Ipagpatuloy mo ‘yan.” (“I’m happy that you have been taking your medications everyday. Keep it up.”) “Maaari ka nang maghanap ng trabaho kapag gumaling ka na.” (“You may start looking for a job when you get well.”) “Kamusta na po ang pamilya ninyo?” (“How is your family?”) Reassure patients frequently that MDR-TB is curable and that as long as they come for treatment, they will receive highly effective care. Point out how much weight they have gained, how much their cough has decreased, and how well they are looking. Encourage patients by telling them how much of the treatment has been finished. 1.4 Speak clearly and simply Speak clearly, using words that the patient can understand. For example, many patients would NOT understand the following statement: “Ang DST na ginawa sa iyong plema ay nagpapakita na hindi angkop ang first-line drugs. Ito ay tinatawag na MDR-TB na nangangailangan ng araw-araw na kumbinasyon ng mga gamot kasama na ang fluoroquinolone at iba pang second-line drugs.” “Your drug susceptibility pattern shows resistance to first-line agents. The treatment for MDR-TB requires daily combination therapy including a fluoroquinolone and other second-line anti-tuberculosis agents.” Instead, say the following: “Ayon sa pagsusuri ng iyong plema napatunayan na ang mikrobyong TB na nasa baga mo ay hindi basta napapagaling ng mga pangkaraniwang gamot laban sa TB. Samakatuwid, kinakailangan mong uminom ng iba’t ibang uri ng gamot araw-araw na hindi kukulang sa isa at kalahating taon. May kasama itong ineksyon na hindi kukulang sa 6 na buwan.” “The tests of your sputum show that the TB germs you have are not killed by the usual drugs that are used to treat TB. Therefore, in order to treat drug-resistant TB you will have to take a number of different drugs every day for at least 18 months. This will include an injection that will be given for at least 6 months.” 1.5 Encourage the patient to ask questions Make sure that the patient feels comfortable enough to ask questions. After giving instructions or an explanation, pause and ask, “Do you have any questions? I know this is a lot of information at once.” Patients may be timid and concerned about appearing ignorant. Or they may be nervous or in a panic and simply want to leave the health facility in a hurry. It may take courage for them to ask questions. Praise patients for asking questions and answer them thoughtfully and carefully. For example, say: “I’m glad you asked that question....” “Mabuti tinanong nyo ‘yan.” “Good question....” “Magandang tanong po‘yan.” 10 Inform Patients about MDR-TB MODULE D 1.6 Ask checking questions Checking questions are questions intended to find out what a person has learned, so that you can provide more information or clarify your instructions as needed. After providing information, ask checking questions to ensure that the patient understands the information given. At the end of a visit, ask checking questions to ensure that the patient understands what to do next. For example, suppose that you have explained to the patient the necessity of DOT for MDR-TB and what can happen when someone does not take their drugs. To check understanding, you might ask the patient: “Bakit po kailangang uminom ng gamot araw-araw na walang liban? “Why is it important to take all of the drugs each day, without fail?” Suppose that you have instructed the patient to return with an early morning sputum sample for a follow-up sputum examination. To make sure that the patient knows what to do and understands the importance, you might ask such checking questions as: “When will you cough up the sputum?” “Kailan mo kokolektahin ang iyong plema?“ “What container will you use?””Ano ang gagamitin mong lagayan ng plema?” “Why is this so important?” “Ano ang kahalagahan nito?“ When you ask a checking question, try to phrase it so that the answer must be more than simply “yes” or “no.” For example, you would not ask: “Do you remember when to produce your sputum for follow-up tests?” “Naalala mo ba kung kailan mo ibibigay and susunod mong plema?” The patient might answer “yes” to this question to avoid seeming forgetful. Better questions would be: “Saan po kayo pupunta para sa susunod ninyong eksaminasyon ng plema? Kailan kayo pupunta?” (“Where will you go for your next follow up sputum and culture exams? When will you go?”) Asking checking questions requires patience. Give the patient time to think and answer. If the patient is silent, your impulse may be to answer the question yourself or quickly ask a different question. The patient may know the answer but slow to respond for several reasons. The patient may be timid, may be surprised that you really expect an answer, or may be afraid of answering incorrectly. Wait for an answer and give encouragement. Sometimes you may get an incomplete or unclear answer to a checking question. Then you will need to ask a follow-up question to see if the patient really understands. For example: After explaining which household members should be examined or tested for MDR-TB, you may ask, “Sinu-sino sa mga kasambahay mo ang kinakailangang suriin para sa TB?” “Who among your household members needs to be examined or tested for MDR-TB?” The patient answers, “If they are less than 5 years old.” Since it is not clear that the patient knows that older children and adults with cough should be tested, you could follow up by saying: “You are right that all children under 5 should be examined for TB symptoms. What about others in the household? What is the main sign to look for in others?” “Tama ka na ang mga batang wala pang 5 na taong gulang ay kailangang suriin. Paano yung ibang mga kasambahay mo? Anong sintomas ang palatandaan na ang isang tao ay posibleng may TB?” Inform Patients about MDR-TB 11 MODULE D If the patient answers incorrectly or cannot remember, be careful not to make the patient feel uncomfortable. Clarify advice, or give more information. Then ask a checking question again. Now do Exercise A – Written Exercise When you have reached this point in the module, you are now ready to do Exercise A. Follow the instructions for Exercise A. When you have finished the exercise, review your answers with a facilitator. 12 Inform Patients about MDR-TB MODULE D Exercise A Written Exercise – Checking questions For this exercise you will practice using checking questions to make sure that patients understand the information being provided. For each of the following situations, read the case information and then answer the questions. 1. During an initial visit of an MDR-TB suspect, the health worker gives the following information: “Just like the diagnosis for TB, sputum samples will be collected. For MDR-TB, we need 2 samples. One will be collected today, and one will be collected tomorrow morning as soon as you wake up. Place the specimen in cold storage after collection and during transport to the Treatment Center. Bring the morning sputum to the Treatment Center as soon as you can”. Tell the patient what time the Center opens. The sputum samples will be sent for direct sputum smear microscopy (DSSM) and culture. By doing these tests we will know if there are TB germs in your lungs. A culture determines the growth of TB germs from your sputum and will tell us if there are live TB germs in your sputum. If the result of the culture shows that you have live TB germs in your sputum, then a third test will be done. This test is called a drug susceptibility test. The drug susceptibility test or DST determines which drugs can kill the TB germs and which drugs cannot. Once we have the results from the DST , we will know how to better treat the TB disease you have. You will also need to have a chest x-ray so we can see any possible damage in your lungs. List two checking questions that the health worker might ask at the end of the visit to ensure that the patient understands: – – 2. An MDR-TB patient who has just been shifted to the continuation phase began to interrupt treatment, the health worker stresses the following information: “Even now that you feel well, it is important that you must continue coming for treatment. You have successfully finished 6 months of treatment. You must continue to take all of these tablets every day at this facility. Taking only some of the drugs, or taking them irregularly, is dangerous and can make the disease difficult or impossible to cure and you may get sick again.” List two checking questions that the health worker might ask at the end of the visit to ensure that the patient understands: When you have finished this exercise, review your answers with a facilitator. Then read until the next exercise. Inform Patients about MDR-TB 13 MODULE D 2. Inform the patient about the possible diagnosis of MDR-TB and steps to be taken During the first meeting with the MDR-TB suspect, the health worker in the Treatment Center must do the following tasks: 1. Fill out an MDR-TB Screening Form including performing a physical examination 2. Fill out the TB Symptomatics Masterlist 3. If the patient is seriously ill and needs to be started on treatment right away, expedite the enrollment; refer at once to the Consilium while awaiting DST. 4. Complete the PMDT Acknowledgement Form for Initial Diagnosis and send this back to the referring physician 5. Provide patient education on possible diagnosis and next steps 6. Obtain the patient’s signature through the “ Paunawa”or Terms of Understanding signifying that the important information has been given to him in the interview. Most of these tasks are taught in Module B: Detect Cases of MDR-TB. This section of this module will focus on the fifth task written above, informing the patient about the possible diagnosis and next steps. Remember that the MDR-TB suspect may be quite scared or nervous about what they may have. Think about how you might feel if you were the patient. All communication must be kind, supportive and medically correct. It is most important for the MDR-TB suspect to understand the messages regarding the following: 1. Possible diagnosis of MDR-TB Identify what the patient knows about the purpose of the referral to the Treatment Center then tell the patient the following: “You have been referred to the Treatment Center because you have been identified as possibly having multidrug-resistant TB or MDR-TB. MDR-TB is suspected in patients who continue to have symptoms while on treatment or has had history of TB treatment, or have had close contact with someone who has MDR-TB. It is possible that the drugs you are taking or took before did not kill the TB germs. There are a number of tests that will be done to determine if you have MDR-TB. Once diagnosed however, MDR-TB can be cured as long as the medicines are taken daily for 18-24 months. 2. Stopping present TB treatment There are some patients for whom the treatment of TB needs to be stopped while waiting for the DST results. These patients include Category II failures, and previously treated patients with two or more treatment courses in the past. This depends on the patient’s history of TB treatment or the outcome he had from these treatments. Inform the patient and his family that his present TB treatment needs to be stopped to prevent amplification of resistance. Refer to the Decision Table for patients awaiting DST results in Module B: Detect Cases of MDR-TB. Communicate to the patient the following: “Those of you who have failed Category II treatment or were previously treated with two or more treatment courses in the past are advised to stop TB treatment while we run the tests for MDR-TB. This is because the current drugs that you are taking aren’t working the way they should be and may worsen your condition if continued. A possible reason why the drugs aren’t working may be that your TB germs are resistant to these drugs. If diagnosed with MDR-TB, you will receive a different treatment.” 14 Inform Patients about MDR-TB MODULE D 3. Diagnostic tests to be done (Direct sputum smear microscopy or DSSM, culture, DST) Several sputum tests need to be done to diagnose MDR-TB. Inform the patient about the diagnostic tests by saying: “Just like the diagnosis for TB, we will ask you to provide sputum samples. One will be collected today, and another one will be collected tomorrow morning as soon as you wake up. Place the specimen in a cool place after collection and while you bring it here. Bring it here as soon as you can. ” Tell the patient what time the Center opens. “That sputum sample will be sent for a couple of tests, DSSM and culture to see if you have TB germs in your lungs. A culture determines if there are live TB germs in your sputum. If the result of the culture shows that you have live TB germs in your sputum, then a third test will be done. This test is called a drug susceptibility test or DST.” “The DST tells us which drugs can kill the TB germs and which drugs cannot. Once we have the results from the DST, we will know what drugs are fit to best treat the disease you have.” 4. Timelines for receiving test results The patient needs to know when to expect the test results. Orient the patient on the timelines for receiving the test results by telling him the following: “You may call in for the results of the DSSM 4 to 5 days after you have submitted the 2nd sample.” “The results of the culture test will be ready around 3 to 3.5 months after the collection of the sputum.” “The results of the DST test will be ready around 4 to 5 months after the collection of the sputum. You may call after this time. If your DST result shows you have MDR-TB and we did not receive a call from you, we will call you, or send you a letter using the address on your MDR-TB Screening Form.” 5. Calling the Treatment Center for test results The patient should follow-up for the test results by calling the Treatment Center. The contact information of the Treatment Center is provided to the patient. Say the following to the patient: “Use this telephone number (provide number of the Treatment Center) to call for the results. You will have to give your patient number (Screening code) and you will be given instructions on the next steps at the time that the results come in.” 6. What is treatment like for MDR-TB If diagnosed to have MDR-TB, the patient needs to undergo supervised treatment for at least 18 months at a Treatment Center. Ask the patient if he knows what treatment for MDR-TB is like. Briefly provide information on MDR-TB treatment by saying: “If diagnosed to have MDR-TB, you will need at least 18 months of continuous treatment with second-line drugs. Treatment interruption will lead to worsening of your condition making it incurable. Second-line drugs are very expensive and difficult to take because of side effects. Because of this, you need to come to the Treatment Center daily or to a trained facility for close follow-up.” 7. How to stop spreading TB at home while waiting for test results MDR-TB suspects are most likely to be infectious. Patients need to know how to prevent the spread of TB to others in their family and community. It is relevant to know first what the patient thinks as to how TB is transmitted before telling him the following: “To prevent the spread of TB to others in the family and community, you need to cover your mouth and nose when coughing or sneezing. You also need to open windows and doors to allow fresh air to flow Inform Patients about MDR-TB 15 MODULE D through the home. An electric fan directing the air to the outside will help. Avoid sleeping with someone in the same room, if possible. There is no need to eat a special diet or to sterilize dishes or household items.” 8. What to do if hemoptysis occurs MDR-TB suspects may experience hemoptysis while waiting for their test results. To allay their anxiety and express willingness to assist them, tell the patient the following: “Inform the Treatment Center staff when you cough up blood. Consult at the Treatment Center or the nearest physician or hospital.” The next pages present a brief Guide for initial patient information about MDR-TB. It summarizes how to use the communication skills, questions, and messages discussed so far in this module in an initial meeting to inform the patient. A Tagalog version of this guide can be found in Annex B. After providing patient education on the possible diagnosis of MDR-TB, the Treatment Center staff will use the Paunawa or Terms of Understanding for additional information to the patient and his family. The Treatment Center staff then obtains the signatures of the patient and his family member or relative on two copies of the Paunawa or Terms of Understanding (see Reference Booklet). One copy will be attached to the patient’s chart and the second copy will be given to the patient. 16 Inform Patients about MDR-TB MODULE D Guide for initial patient information about the possible diagnosis of MDR-TB Use this guide to remind you of what to ask and say during an initial information session with an MDR-TB suspect. The left column includes examples of questions to ask MDR-TB suspects. The right column lists messages related to the questions on the left. Throughout the visit: Demonstrate a caring, respectful and friendly attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask the patient questions such as: Then give relevant messages on: Possible diagnosis of MDR-TB Why do you think you have been referred here today? What do you think may have caused your illness? You have been referred to the Treatment Center because you have been identified as possibly having multidrug-resistant TB or MDR-TB. MDR-TB is suspected in patients who continue to have symptoms, remain positive in the sputum test while on treatment or has had history of TB treatment, or have had close contact with someone who has MDR-TB. It is possible that the drugs you are taking or took before did not kill the TB germs. There are a number of tests that will be done to determine if you have MDR-TB. Once diagnosed however, MDR-TB can be cured as long as the medicines are taken daily for 18-24 months. Stopping present TB treatment Why do you think your treatment is not working? For you who –– have failed Category II treatment, –– were previously treated with two or more treatment courses in the past, you are advised to stop TB treatment while we run the tests for MDR-TB. This is because the current drugs that you are taking aren’t working the way they should be and may worsen your condition if continued. A possible reason why the drugs aren’t working may be that your TB germs are resistant to these drugs. If diagnosed with MDR-TB, you will receive a different treatment. Starting on Category II For you who: • relapsed • returned after default • failed category I • have had one previous non-DOTS treatment or DOTS treatment that does not fulfill the usual patient types, you are advised to start Category II in your DOTS facility while awaiting DST. Inform Patients about MDR-TB 17 MODULE D Ask the patient questions such as: Then give relevant messages on: Diagnostic tests to be done (DSSM, culture, DST) Just like the diagnosis for TB, we will ask you to provide sputum samples. One will be collected today, and one will be collected tomorrow morning as soon as you wake up. Place the specimen in a cool place as soon as collected and while you are transporting it here. Bring it here as soon as you can. Tell the patient what time the Center opens. How do we know if you have MDRTB? That sputum sample will be sent for a couple of tests, direct sputum smear microscopy (DSSM) and culture to see if you have TB germs in your lungs. A culture determines if there are live TB germs in your sputum . If the result of the culture shows that you have live TB germs in your sputum, then a third test will be done. This test is called a drug susceptibility test or DST. The DST tells us which drugs can kill the TB germs and which drugs cannot. Once we have the DST results, we will know how to better treat the disease you have. Timelines for receiving test results “You may call in for the results of the DSSM 4-5 days after you have submitted the 2nd sample.” When will you receive the results of the test? The results of the culture test will be ready around 3-3.5 months after the collection of the sputum. The results of the DST test will be ready around 4-5 months after the collection of the sputum. You may call after this time. If your DST result shows you have MDR-TB and we did not receive a call from you, we will call you or send you a letter using the address on your MDR-TB Screening Form.” Calling the Treatment Center for test results How will you contact the treatment center for the test results? What is treatment like for MDR-TB? 18 Inform Patients about MDR-TB “Use this telephone number (provide number of the Treatment Center) to call for the results. You will have to give your patient number (Screening code) and you will be given instructions for follow up at the time that the results come in.” Supervised treatment for at least 18 months If diagnosed to have MDR-TB, you will need at least 18 months of continuous treatment with second-line drugs. Treatment interruption will lead to worsening of your condition making it incurable. Second-line drugs are very expensive and difficult to take because of side effects. Because of this, you need to come to the Treatment Center daily or to a trained facility for close follow-up. MODULE D Ask the patient questions such as: Then give relevant messages on: How to stop transmission of TB at home while waiting for test results To prevent the spread of TB to others in the family and community: How can you avoid spreading TB or MDR-TB? - Cover your mouth and nose with tissue or cloth when coughing or sneezing. - Open windows and doors to allow fresh air to flow through the home. An electric fan directing the air to the outside will help. - Do not sleep with someone in the same room, if possible. There is no need to eat a special diet or to sterilize dishes or household items. What will you do when you cough up blood? What to do if the patient coughs up blood “Inform the Treatment Center staff when you cough up blood. Consult at the Treatment Center or the nearest physician or hospital.” Review: Ask checking questions (to ensure that the patient remembers important messages and knows what to do next). Reinforce earlier messages, or give more information as needed. Inform Patients about MDR-TB 19 MODULE D 3. Orient the patient on MDR-TB and on the procedures to be done for enrollment after Consilium approval Once the Consilium has approved a treatment regimen for the confirmed MDR-TB patient, the health worker must do the following tasks: 1. Contact the patient for scheduling of enrollment 2. Inform the patient about MDR-TB and the enrollment procedures 3. Obtain signatures from the patient and his significant other, e.g., a family member or close relative, through the “Kasunduan”or Contract signifying that the important information has been given and that the patient agrees on the items stated. 4. Explain the need to trace contacts of all ages with cough of more than 2 weeks and children less than 5 years with or without symptoms. 5. Obtain baseline sputum for DSSM, culture and DST using the Mycobacteriology Request Form once the patient returns to the Treatment Center, and request for chest x-ray and blood chemistries Most of these tasks are taught in Module C: Treat MDR-TB patients. This section of this module will focus on the second task, informing the patient about MDR-TB and the enrollment procedures. Remember to ask questions about the patient’s current knowledge about MDR-TB in order to determine what information to provide. Some questions were suggested in section 1.1 of this module. TB is more than just a medical problem. Particularly some MDR-TB patients have gone through a lot of emotional and psychosocial stresses from the chronic illness. They have experienced ostracism, rejection frustrations from repeated unsuccessful treatments and lack of self-worth. They continue to undergo stress as most of them are breadwinners, mothers, etc. who needed to change lifestyle either because of relocation or to hurdle the adverse drug reactions (ADRs) of second-line drugs (SLDs). Interventions addressing these are essential in ensuring adherence to the treatment regimen for a successful completion of treatment. It is most important for the MDR-TB patient (and family, if present) to understand the messages about the following: • Multidrug-resistant TB (MDR-TB) A great majority of patients do not know about MDR-TB. Make sure that you tell them about the disease using simple language. Say to the patient the following: “Multi drug-resistant TB means that the TB bacteria are not killed by the medicines used to treat ordinary TB, so we have to use other medicines. This TB germ that is drug-resistant is more difficult to treat than the ordinary TB germ. MDR-TB can occasionally come from direct transmission from a person with this serious type of TB.” “Even so, most forms of drug-resistant TB can be cured if it is treated early and all of the medicines are taken regularly during the required duration of treatment.” • The difference between ordinary TB and MDR-TB To further explain to the patient the nature of MDR-TB, differentiate it from ordinary (drug-susceptible) TB by saying the following: “The germ causing TB and MDR-TB is the same, but MDR-TB is more difficult to fight and this means that: –– Treatment for MDR-TB is much longer (usually 18-24 months, or more). 20 Inform Patients about MDR-TB MODULE D –– –– • MDR-TB is not curable with the medicines that we use to treat ordinary TB, so we have to use other medicines, called second-line anti-TB drugs (SLDs). These different medicines are not as effective as the medicines used for ordinary TB and in addition, can cause more side effects. But these are the best options left for MDR-TB. –– The treatment for DR-TB requires a lot of resources and we all have to put in a greater effort in order to succeed. –– It is more difficult to treat, and if it is not treated correctly, would lead to resistance to more drugs. The disease can become incurable and you could die. –– But MDR-TB patients can be cured with regular intake of appropriate medicines! –– As of now, MDR-TB can be cured using SLDs. Failure to properly treat MDR-TB can lead to XDR-TB, which is quite serious with high rate of failure and death. Hence, XDR-TB should be avoided by religiously taking the drugs for MDR-TB.” Why the patient has MDR-TB The patient may already have his own ideas or beliefs as to why he has MDR-TB. Take time to know them and consider them when you explain to the patient the following: “There are two main reasons why a person could have MDR-TB: 1. The germ became resistant during a previous treatment (acquired) –– –– –– If the medicines were not correct or were not of good quality If the daily intake of medicines was interrupted or the duration of treatment was shortened, (Don’t blame the patient, simply explain the possible reasons). If the intake of the medicines was not directly observed to ensure uninterrupted treatment, (It is the health care workers’ job to make sure you take your medicines). 2. You may have caught MDR-TB from another person with MDR-TB (primary).” • Transmission of MDR-TB Though most MDR-TB patients have undergone more than one treatment course, they may still have incorrect notions about how TB is transmitted. Listen well to the patient’s ideas as to how he thinks MDR-TB is transmitted and provide correct information by saying the following: “MDR-TB and XDR-TB, just like ordinary TB, spreads when an infected person coughs or sneezes, and sprays TB germs into the air that may be inhaled by others who then become infected.” “It is easy to pass on the germs to household members especially when an untreated infectious MDR-TB patient lives in crowded conditions with others. Even if other household members had no previous anti-TB treatment, they can still be infected with DR-TB if the sick member of the household has DR-TB. Anyone can be infected with TB. However, not everyone who is infected with TB will become sick.” “MDR-TB and XDR-TB are as contagious as ordinary TB.” • The treatment for MDR-TB Now that the patient knows that he has MDR-TB, explain clearly to him what treatment is like for MDR-TB by telling him the following: “Just like ordinary TB, every patient receives at least 4 kinds of medicines and one of them will be an injectable. The number of tablets or capsules will depend on your body weight. The treatment will last approximately 18-24 months. Your physician will decide which medicines are appropriate and will tell you when the treatment will end. You will take medicines every day, except Sundays. A health care worker will always observe you as you take your medicines.” Inform Patients about MDR-TB 21 MODULE D “The SLDs are very expensive but will be provided for free. They are not as effective as the first-line drugs and cause more side effects but they are the best options left for MDR-TB at this time.” • Necessity of supervised treatment Supervised treatment is a non-negotiable aspect of MDR-TB treatment. Describe to the patient how this is done. Emphasize to the patient the basis for and the benefits he can derive from supervised treatment by telling him the following: “A trained health worker or a treatment partner must observe you swallow all the drugs every time. This will ensure that you take the correct drugs regularly for the required time. By seeing you daily, the health worker or treatment partner will also note whether you are improving or have problems like ADRs.” “If you do not take all of the drugs, MDR-TB will not be cured and you will continue to spread MDR-TB to your family or to the community where you live. It is dangerous to stop or interrupt treatment, because then the disease may become incurable. With supervised treatment, the health worker or treatment partner will be able to monitor if a dose is missed and can quickly investigate the problem.” “Though TB is a curable disease, many Filipinos get sick and die from the disease. Explain that in many countries all over the world supervised treatment is shown to have much higher chances of curing patients. These are rules for the benefit of the patient and since treatment for MDR-TB is an expensive, long process and the last option for the patient to be cured, every measure must be taken to ensure that the treatment is a success. This discussion should be dealt with with utmost respect for the patient, emphasizing the fact that our ultimate concern is for his cure.” Sometimes a patient will not be able to come for supervised treatment for a day or more because of a conflict such as travel or a funeral. This should be avoided to the extent possible while the patient is under treatment especially if the travel is to an area where there are still no services for MDR-TB management; otherwise, the absence will just be counted as a missed dose and will be made up at the supposed end of treatment. While some patients may not understand the policy for supervised treatment for MDR-TB management, explain in the most respectful and gentle way that it may represent their last opportunity to be cured of the disease and that it is enforced with their best interest in mind. “Traveling to areas where there are no services yet for MDR-TB should be avoided while on treatment. However, if travel is unavoidable for emergencies, it is important to let the health worker or your treatment partner know so that arrangements, if possible, can be made with another MDR-TB trained health worker or volunteer who is not a family member to continue treatment without interruption. However, if this cannot be arranged, this will be considered a missed dose and will just be made up at the end of treatment.” “Initially, while your sputum is still positive, you need to limit your contact with other people. However, when you become negative, you may be able to go back to your usual activities. The Treatment Center staff will assist you in any way possible to make you feel comfortable.” “You will be given specific DOT time schedule by the Treatment Center staff. This will decrease your waiting time. “ • Preventing the spread of MDR-TB Now that the patient knows the nature of MDR-TB and its treatment, you may ask him how he thinks he can prevent the spread of MDR-TB. Stress to the patient how he can prevent others in the family and community from getting the disease by telling him the following: “Do not interrupt your treatment so that you become non-infectious after about 2 months of good adherence to treatment as evidenced by negative sputum test results and be cured.” 22 Inform Patients about MDR-TB MODULE D “Cover your mouth and nose when coughing or sneezing.” “Do not spit anywhere. Spit directly into a can half-filled with Chlorox. Flush the contents of the can from time to time.” “Open windows and doors to allow fresh air to flow through the home. An electric fan blowing the air to the outside direction will help.” “If possible, do not share your bedroom with other people until your doctor says you are no longer infectious.” “There is no need to eat a special diet or to separate eating utensils or household items.” • Their rights and their corresponding responsibilities to themselves and the community where they live. Refer to The Patients’ Charter (Annex A). The Patients’ Charter was initiated and developed by patients from around the world, and outlines the rights and responsibilities of people with TB. It empowers people with TB and their communities, and makes the relationship between patient and health care providers mutually beneficial (see Annex A: The Patients’ Charter for TB Care) • Support services that are available at Treatment Centers during and after treatment to help patients cope with their situations Support services are essential in ensuring adherence to the treatment regimen for a successful completion of treatment. Inform patients about the existing services or support options in some Treatment Centers such as: • –– Group therapy sessions moderated by a psychologist or a trained health staff where they can share experiences among patients to process psychosocial issues including feelings of rejection, depression, abandonment, stigma and lack of self-esteem. –– One-on-one counseling provided by health care workers trained to undertake this task, like the psychologists and social workers for individual patients with unique and specific problems, e.g., abandonment of spouse, hallucinations as side effect of cycloserine –– General assembly – where patients get education through peer counselors and health workers, is a form of patient empowerment where patients successfully treated or still undergoing treatment can provide counseling, encouragement, and serve as models for patients who are starting and encountering significant problems with adverse drug effects. –– Livelihood training for boosting the self-esteem through income-generating activities supervised by social workers to prepare the patients for eventual integration into society after the treatment is completed, and addresses boredom. –– Patient volunteer services where MDR-TB patients capable of rendering service in assisting other patients as treatment partners and assisting the health care workers in simple clerical tasks at the Treatment Centers. –– Group activities including gardening, raising poultry, and preparation of communal food, field trips to enhance camaraderie, bonding, and self-worth. –– Provision of pastoral care such as bible studies, recollection, and assisting in religious rites (voluntary). Household contact tracing Contact tracing will allow early detection and treatment. Explain to the patient how this is done by saying the following: “All your household contacts will be interviewed for symptoms. All those younger than five years, and all others with cough of more than two weeks must be examined for MDR-TB. This will entail a physical exam, Inform Patients about MDR-TB 23 MODULE D sputum collection and possibly chest x-ray and, skin testing called PPD (Purified Protein Derivative) for children.” • What to expect; what to do next The patient’s treatment will commence when he has completed the requirements for enrollment. Instruct him by saying: “Once you have completed the requirements for enrollment, your treatment is ready to begin.” “Your treatment may temporarily require you to limit your activities and contact with other people while your sputum is still positive.” Make sure that the patient knows exactly where and when to go for the next treatment, e.g. “tomorrow before the Treatment Center closes at ___ in the afternoon.” Ask questions to ensure that this will be possible and that the patient is committed to return. Remind the patient to bring all family members for symptoms interview, and contacts younger than five years, and those belonging to other ages who have cough of more than two weeks for MDR-TB screening. The next pages present a brief Guide for patient information at enrollment. It summarizes how to use the communication skills, questions, and messages discussed so far in this module during the meeting to inform the patient that treatment for MDR-TB will begin. Feel free to take out the pages and use them as a job aide. You can also find these guides in the Reference Booklet. 24 Inform Patients about MDR-TB MODULE D Guide for initial patient information at enrollment Use this guide to remind you of what to ask and say during the information session with an MDR-TB patient who is about to begin treatment. The left column includes examples of questions to ask MDR-TB patients. The right column lists messages related to the questions on the left. Emphasize different messages with different patients, depending on their current knowledge about TB, MDR-TB, and XDR-TB. Throughout the visit: Demonstrate a caring, respectful and friendly attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask the patient questions such as: Then give relevant messages: MDR-TB What do you understand about multidrug-resistant tuberculosis? Multi drug-resistant TB means that the TB bacteria is not killed by the medicines used to treat ordinary TB, so we have to use other medicines. This TB germ that is drug-resistant is more difficult to treat than the ordinary TB germ. MDR-TB can occasionally come from direct transmission from a person with this serious type of TB. Even so, most forms of drug-resistant TB can be cured if it is treated early and all of the medicines are taken regularly during the required duration of treatment. The difference between TB and MDR-TB How do you think TB and MDR-TB are different? How do you think they are the same? The germ causing TB and MDR-TB is the same, but MDR-TB is more difficult to fight and this means that: –– Treatment for MDR-TB is much longer (usually 18-24 months, or more). –– MDR-TB is not curable with the medicines that we use to treat ordinary TB, so we have to use other medicines, called second-line anti-TB drugs. –– These different medicines are not as effective as the medicines used for ordinary TB and in addition, can cause more side effects. –– The treatment for drug-resistant TB requires a lot of resources and we all have to put in a greater effort in order to succeed. –– MDR-TB is more difficult to treat, and if not treated correctly, would lead to resistance to more drugs. The disease can become incurable and you could die. –– But MDR-TB patients can be cured with regular intake of appropriate medicines! As of now, MDR-TB can be cured using SLDs. Failure to properly treat MDR-TB can lead to XDR-TB, which is quite serious with high rate of failure and death. Hence, XDR-TB should be avoided by religiously taking the drugs for MDR-TB. –– Inform Patients about MDR-TB 25 MODULE D Ask the patient questions such as: Then give relevant messages: Why the patient has MDR-TB There are two main reasons why a person could have MDR-TB: 1. The germ became resistant during a previous treatment (Acquired). Why do you think you have MDR-TB? –– –– –– If the medicines were not correct or were not of good quality If the daily intake of medicines was interrupted or the duration of treatment was shortened, (Don’t blame the patient, simply explain the possible reasons). If the intake of the medicines was not directly observed to ensure uninterrupted treatment. (It is the health care workers’ job to make sure you take your medicines.) 2. You may have caught MDR-TB from another person with MDR-TB (Primary). Transmission of drug-resistant TB MDR-TB and XDR-TB, just like ordinary TB, spreads when an infected person coughs or sneezes, and sprays TB germs into the air that may be inhaled by others who then become infected. How do you think that drug-resistant TB spreads? It is easy to pass on the germs to household members especially when an untreated infectious MDR-TB patient lives in crowded conditions with others. Even if other household members had no previous anti-TB treatment, they can still be infected with DR-TB if the sick member of the household has DR-TB. Anyone can be infected with TB. However, not everyone who is infected with TB will become sick. MDR-TB and XDR-TB are as contagious as ordinary TB. What is treatment like for MDR-TB? What are the details of patient’s treatment regimen? Just like ordinary TB, every patient receives at least 4 kinds of medicines and one of them will be an injectable. The number of tablets or capsules will depend on body weight. The treatment will last approximately 18-24 months. Your physician will decide which medicines are appropriate and will tell you when the treatment will end. You will take medicines every day, except Sundays. A health care worker will always observe you as you take your medicines. The SLDs are very expensive but will be provided for free. They are not as effective as the first-line drugs and cause more side effects but they are the best options left for MDR-TB. 26 Inform Patients about MDR-TB MODULE D Ask the patient questions such as: Then give relevant messages: A trained health worker or a treatment partner must observe you swallow all the drugs. This will ensure that you take the correct drugs regularly for the required time. By seeing you regularly, the health worker or treatment partner will also note whether you are improving or have problems like ADRs. If you do not take all of the drugs, MDR-TB will not be cured and you will continue to spread MDR-TB to your family or to the community where you live. It is dangerous to stop or interrupt treatment, because then the disease may become incurable. With supervised treatment, the health worker or treatment partner will be able to monitor if a dose is missed and can quickly investigate the problem. Why is there a need for supervised treatment? Though TB is a curable disease, many Filipinos get sick and die from the disease. Explain that in many countries all over the world supervised treatment is shown to have much higher chances of curing patients. These are rules for the benefit of the patient and since treatment for MDR-TB is an expensive, long process and the last option for the patient to be cured, every measure must be taken to ensure that the treatment is a success. This discussion should be dealt with with utmost respect for the patient, emphasizing the fact that our ultimate concern is for his cure. Traveling to areas where there are no services yet for MDR-TB should be avoided while on treatment. However, if travel is unavoidable for emergencies, it is important to let the health worker or your treatment partner know so that arrangements, if possible, can be made with another trained health worker or volunteer who is not a family member to continue treatment without interruption. However, if this cannot be arranged, this will be considered a missed dose and will just be made up at the end of treatment. Initially, while your sputum is still positive, you need to limit your contact with other people. However, when you become negative, you may be able to go back to your usual activities. The treatment center staff will assist you in any way possible to make you feel comfortable. You will be given specific DOT time schedule by the treatment center staff. This will decrease your waiting time. Preventing the spread of drug-resistant TB How can you avoid spreading drug-resistant TB? To prevent the spread of DR-TB to others in the family and community: • Do not interrupt your treatment so that you become noninfectious after 2 months of good adherence to treatment as evidenced by negative sputum test results and be cured. • Cover your mouth and nose when coughing or sneezing. • Do not spit anywhere. Spit directly into a can half-filled with Chlorox. Flush the contents of the can from time to time. • Open windows and doors to allow fresh air to flow through the home. An electric fan to blow the air to the outside direction will help. • If possible, do not share your bedroom with other people until your doctor says you are no longer infectious. There is no need to eat a special diet or to separate eating utensils or household items. Inform Patients about MDR-TB 27 MODULE D Ask the patient questions such as: Then give relevant messages: The Patients’ Charter What are the rights of MDR-TB patients and their corresponding responsibilities? What are the support services that are available during and after treatment to help patients cope with their illness and treatment? How many people live with you? What ages? Does anyone else in your household have cough? Who has a cough? 28 Inform Patients about MDR-TB The Patients’ Charter was initiated and developed by patients from around the world, and outlines the rights and responsibilities of people with TB. It empowers people with TB and those affected by it, and their communities. This makes the relationship between patient and health care providers mutually beneficial (see Annex A: The Patients’ Charter) Support services are essential in ensuring adherence to the treatment regimen for a successful completion of treatment. Inform patients about the existing services or support options at Treatment Centers such as: –– Group therapy sessions moderated by a psychologist or a trained health staff where they can share experiences to process psychosocial issues including feelings of rejection, depression, abandonment, stigma and lack of self-esteem among patients. –– One-on-one counseling provided by health care workers trained to undertake this task, like the psychologists and social workers for individual patients with unique and specific problems, e.g., abandonment of spouse, hallucinations as side effect of cycloserine –– General assembly – where patients get education through peer counselors and health workers is a form of patient empowerment where patients successfully treated or still undergoing treatment can provide counseling, encouragement, and serve as models for patients who are starting and encountering significant problems with adverse drug effects. –– Livelihood training for boosting the self-esteem through income generating activities supervised by social workers to prepare the patients for eventual integration into society after the treatment is completed, and addresses boredom. –– Patient volunteer services where MDR-TB patients capable of rendering service in assisting other patients as treatment partners and assisting the health care workers in simple clerical tasks at the treatment centers. –– Group activities including gardening, raising poultry, and preparation of communal food, field trips to enhance camaraderie, bonding, and self-worth. –– Provision of pastoral care such as bible studies, recollection, and assisting in religious rites (voluntary). Household contact tracing “All your household contacts will be interviewed for symptoms. All those younger than five years old and those of other ages with cough of more than two weeks must be examined for MDR-TB. This will entail sputum collection and possibly chest x-ray for adults with symptoms, and a physical exam, chest x-ray and skin testing called TST (Tuberculin Skin Test) for children.” MODULE D Ask the patient questions such as: Then give relevant messages: What to expect; what to do next Once you have completed the requirements for enrollment, your treatment is ready to begin. Your treatment may temporarily require you to limit your activities and contacts with other people while your sputum is still positive. What are the next steps? Make sure that the patient knows exactly where and when to go for the next treatment, e.g. “tomorrow before the Treatment Center closes at ___ in the afternoon.” Ask questions to ensure that this will be possible and that the patient is committed to return. Remind the patient to bring all family members for symptoms interview, and contacts five years and younger and those of other ages who have cough of more than two weeks for MDR-TB screening. Review: Ask checking questions to ensure that the patient remembers important messages and knows what to do next. Reinforce earlier messages, or give more information as needed. Video Presentation When you have reached this point in the module, there will be a video presentation that shows how to inform the patient in the context of a visit in which the patient is told about MDR-TB and begins treatment. If you wish to follow along with the script, it is printed in Annex C at the end of this module. Now do Exercise B – Role Play When you have reached this point in the module, you are ready to do Exercise B. Exercise B is a role play of an initial information session with an MDR-TB patient. Your facilitator will assign roles for the role play. Inform Patients about MDR-TB 29 MODULE D Exercise B Role Play - Initial patient information about TB For this exercise your facilitator will divide you into groups of three to enact a role play. In the role play, one person will act as the health worker, one as the patient, and one as an observer. Then you will change roles and repeat the role play. By repeating the role play several times, each person will eventually have a turn in each role. Background In this role play, a 40-year-old patient, Mr Salas, has just sought consult at the TDF-MMC DOTS Clinic. More information about Mr. Salas is found in the box below. Instructions for the health worker In this role play, your goal is to use good communication skills to provide relevant information about the necessity to stop present treatment while awaiting the test results. At the Treatment Center, after hearing from you about the possible diagnosis of MDR-TB, the need to stop his present treatment and the tests to be done, the patient refuses to stop his present treatment. At the Treatment Site, the patient handed to you the Acknowledgement Form with the recommendation from the Treatment Center physician to stop the patient’s present treatment. The patient still refuses to stop taking his antiTB drugs. To ensure that you include all of the necessary information, use the Guide for initial patient information about the possible diagnosis of MDR-TB at the end of Section 2. Instructions for the patient As the patient, you should respond realistically to the health worker. The box below provides background information such as your name, age, attitude, and personal circumstances. You may make up additional information (consistent with the role) as needed. Information for the patient – Role Play Exercise B Your name is Mr. Salas. You are 40 years old. You are a busy man with steady employment. You have had TB since two years prior; however, because of your schedule, you have not been adherent to your treatment despite having been told several times by your private doctor. Finally, 6 months ago, you decided to treat under DOTS in the health center nearest your house and have been adherent since the start. However, on the sputum followup examination on the 5th month of treatment, you were told that you still have a positive smear and are likely to be MDR-TB. You were then advised to go the TDF-MMC DOTS Clinic which treats MDR-TB patients. However, since you live far from Makati, you instead sought consult from your private doctor who added Ofloxacin to your regimen and resumed the Streptomycin that you used to receive at the health center. You have now been receiving HRZES and Ofloxacin on your own. However, you are worried and not sure anymore if this is the proper treatment. Moreover, you are now having worse symptoms with fever on some days and cough of more than 3 weeks. 30 Inform Patients about MDR-TB MODULE D Information for the patient – Role Play Exercise B continued You decided to go to the TDF-MMC DOTS Clinic for screening and confirmation. You learned that MDR-TB diagnosis takes at least 4 months and that you need to wait that long for it to be confirmed. You are strongly advised to stop your drugs completely and take cough suppressants in the meantime and paracetamol for your fever. You are quite hesitant about this advice expressing to the Treatment Center MD that you don’t agree with this advice. Instructions for the observer Refer to the Guide for initial patient information about the possible diagnosis of MDR-TB as you observe the role play. Tick in the checklist for the observer as the health worker asks questions and gives information listed. After the role play, comment on what was done well and what could be improved. Checklist for the Observer Items to be observed Observation Done Not Done Remarks 1. Use of good communication skills 1.1. Ask questions and listen 1.2 Demonstrate a caring, respectful and friendly attitude 1.3 Praise and encourage the patient to obtain positive goals 1.4 Speak clearly and simply 1.5 Encourage the patient to ask questions 1.6 Ask checking questions 2. Messages 1. Possible diagnosis of MDR-TB 2. Stopping present TB treatment 3. Diagnostic tests to be done (Smear, culture, DST) 4. Timelines for receiving test results 5. Calling the Treatment Center for test results 6. Supervised treatment for at least 18 months at a Treatment Center 7. How to stop spreading TB at home while waiting for test results 8. What to do if hemoptysis occurs Tell a facilitator when everyone in your group has had a turn playing the role of the health worker in this exercise. Then read until the next exercise. Inform Patients about MDR-TB 31 MODULE D 4. Provide drug education to patient using a flip chart Once the patient’s treatment regimen has been approved by the Consilium and the initial patient information about MDR-TB has been given, use the Drug Flipchart to provide information to the patient about the specific drugs he or she will be taking. Each Treatment Center has a Drug Flip Chart that should be used during this meeting with the patient. A flip chart has information for the patient on one side accompanied by important messages on ADRs, expected occurrences and special precautions for the health care worker to communicate. Flip charts can be used to help both the patient and the health care worker. Through this, the patient receives information by listening, and the health care worker has a job aide that provides standardized messages so he or she can be sure not to forget anything. Ideally this chart should contain drawings or photographs so that the patient does not only listen but also sees images to help him remember the messages. It is of benefit to the patient to know what to expect and to be told which of the side effects warrant medical consultation. In Annex D you can read the entire text for the health care worker to explain to the patient as printed on the back of the Drug Flip Chart. Guide for flip chart about MDR-TB drugs This guide is a simplified version of the Drug Flip Chart. You can use this as a reference for the important messages for each patient. The left column includes the title or topic of each page. The right column lists messages that are included on the back of the chart on the page related to the topic on the left. Throughout the visit: Demonstrate a caring, respectful and friendly attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Drug Information H: isoniazid One of the two most potent first-line drugs for TB which is ineffective for MDR-TB. Common side effects that are well-tolerated: abdominal pain, dizziness, nausea and vomiting. Consult your doctor right away if there is yellowing of the skin. R: Rifampicin One of the two most potent first-line drugs for TB which is ineffective for MDR-TB. Your body fluids such as urine, tears and sweat will have red coloration. This is normal. Common side effects are well-tolerated such as abdominal pain, dizziness, nausea and vomiting. This is usually experienced in the first few weeks of treatment. Consult your doctor right away if there is yellowing of the skin. Special precaution: may interact with oral contraceptives. Z: Pyrazinamide Common side effects that are well-tolerated: nausea and vomiting, abdominal pains, body aches, joint pains, and having big pimples on the face and the body. These side effects are usually experienced only in the first few weeks of treatment. If symptoms persist, consult your doctor. Consult your doctor right away if there is yellowing of the skin. Avoid eating food that could induce arthritis or joint pains such as mongo beans, nuts, etc. E: Ethambutol Common side effects that are well-tolerated: abdominal pain, nausea, vomiting and headache sometimes experienced in the first few weeks of treatment. Consult your doctor right away if there is blurring of vision and signs of color blindness especially to red and green. 32 Inform Patients about MDR-TB MODULE D Drug Information S: Streptomycin The injection is given for 6 months at least and is a very important and effective drug. Km: Kanamycin Rotation of injection sites is advised to avoid local discomfort. It is also advised to place warm compress in the area. Cm: Capreomycin Ofx Ofloxacin If there is bleeding after injection which does not happen many times, apply pressure on the injection site. Inform your doctor immediately if you experience the following symptoms: swelling, pain and redness on the injection area, ringing in the ears, skin rash, problem in urination, and muscle weakness. Common side effects include difficulty in sleeping, abdominal pain, decrease in appetite, headache and dizziness. Special precaution: Avoid taking this with drugs or food containing milk, aluminum, magnesium or zinc within 2-3 hours. Take a lot of water and limit exposure to sunlight by using umbrella, sunglasses and wearing long-sleeves. Mfx Moxifloxacin Lfx Levofloxacin Pto Prothionamide This is, one of the most effective drugs for MDRTB. Common side effects include difficulty in sleeping, abdominal pain, decrease in appetite, headache and dizziness. Special precaution: Avoid taking this with drugs or food containing milk, aluminum, magnesium or zinc within 2-3 hours. Take a lot of water and limit exposure to sunlight by using umbrella, sunglasses and wearing long-sleeves. Common side effects include dizziness, vomiting, abdominal pain, diarrhea, sensitivity to light, hypersalivation and metallic taste to the mouth. Eating candy may help decrease this unpleasant taste. You may experience light sensitivity. Limit exposure to sunlight. If this could not be avoided, using sunglasses and umbrella may help. Because of possible dizziness, avoid driving vehicle or operating machinery that needs alertness and attention. Cs Cycloserine Inform your doctor immediately if you will experience the following symptoms: dizziness, headache, chills, decrease in mental and speech ability, numbness of feet and hands, nervousness, confusion, hearing voices others cannot hear, difficulty in sleeping and depression. It is recommended to inform the doctor of whatever side effects you will experience. Because of possible dizziness, avoid driving vehicle or operating machinery that needs alertness and attention. You will be given Vitamin B6 together with Cs to lessen the side effects. PAS Para-amino salicylic acid The kind that is available in the Philippines requires refrigeration during storage. To increase absorption, mix the granules of PAS with an acidic juice such as orange, pineapple and mango juice. Do not use water, buko juice, softdrinks or iced tea. The granules will not be dissolved with the juice. You may use a straw to drink the mixture so that the granules will not lodge in the throat and to avoid biting the granules. All the granules must be taken. Common side effects include vomiting, abdominal pain and diarrhea. If symptoms persist, consult your doctor immediately. If you have signs of dehydration, you may need oral rehydration solution or your doctor may administer fluids intravenously. It is normal to see empty granules in your feces. Clr Clarithromycin Common side effects are well-tolerated such as abdominal pain, nausea and vomiting, and loss of appetite. Inform Patients about MDR-TB 33 MODULE D 5. Continue to provide information throughout treatment (subsequent meetings) After the initial meeting with the MDR-TB patient, continue to give appropriate information about MDR-TB and XDRTB at every visit. Remember to use good communication skills, such as asking questions, showing a caring attitude, praising and encouraging the patient, and using simple language. At each visit choose a few appropriate messages to reinforce or to teach. Do not try to teach too much at one visit. During the earlier visits, you may need to reinforce messages about MDR-TB and XDR-TB and how the disease spreads. You may need to remind the patient to bring family members for testing. Messages about side effects are also important early in treatment. The patient may need to be reassured in order to continue taking the drugs. As treatment continues, you will need to explain the need for follow-up sputum examinations and the process of decentralization. As the patient feels better, you may need to stress the importance of continuing treatment and the dangers of stopping. If a patient misses a day of treatment, or appears discouraged, ask questions to find out why. Offer encouragement and help to solve problems as needed. Give the following information as needed throughout treatment: • Adverse drug reactions (if reported or observed) At every visit, ask the patient how he is feeling, how he feels about the treatment process and encourage him to continue treatment as he becomes closer to being cured every day. Proper management of ADRs is critical to successful treatment outcomes. Most patients will experience some ADRs. Prompt attention to the problem will help them overcome the problems. Many ADRs must be simply tolerated as there is not much you can do for them, but stopping treatment would be much worse. At every visit ask the patient, “How are you feeling?” or another general question such as, “Have you had any problems after taking the drugs?” Then listen to the patient’s answers, and observe the patient to determine whether there are any ADRs. Refer to the section on ADRs in Module C. Treat MDR-TB Cases. Respond as directed. (Note: Do not try to teach the patient the list of ADR as this would be time-consuming and might alarm the patient unnecessarily.) Encourage the patient to overcome the ADR and tell him or her that the ADR will usually go away with time. The graph on the next page is the actual experience of the TDFI-MMC DOTS Clinic among its first 100 MDR-TB patients which provides proof that the most ADRs are experienced during the initial weeks of treatment but as treatment progresses, the number of ADRs drops considerably. This graph will encourage healthworkers to say to patients that the ADRs will diminish with treatment. The Treatment Center may hold a general assembly or health education session to a group of patients to discuss about ADRs and how mild ADRs can be managed at home. This gathering will also allow patients who have overcome the ADRs to share their experience with those who are new in the treatment. 34 Inform Patients about MDR-TB MODULE D Source: MMC DOTS Clinic GLC Report, 4th Monitoring Visit, January 2003 Patients should be informed about the possible ADRs they might experience, and what they should do if they have any. For more detailed information about ADRs and their management, refer to the tables about ADRs found in Section 3.4 and 3.5 of Module C: Treat MDR-TB. • Importance of continuing treatment Stress the importance of continuing treatment. To be cured, the patient must take all of the recommended drugs together, for the recommended duration. Even after the patient begins to feel better, the patient must continue taking the drugs for the entire duration of treatment. MDR-TB takes much longer to cure than ordinary TB and although the patient may feel fine, stopping the drugs could result in increased drug resistance, with the risk of becoming XDR-TB, spreading the disease to friends and family members, progression of the disease, and potential death. Very important: During treatment, patients should be strongly discouraged from traveling out of the area where the Treatment Center or Treatment Site is located to avoid treatment interruption. However, if travel cannot be avoided, the patient should inform the Treatment Center or Site so that a referral to another DOTS facility can be considered and continuing treatment can be arranged. If however, this is not possible, this will be considered a missed dose and the patient will just make up for it at the end of the treatment course. • What happens if the patient takes only some of the drugs or stops treatment? Taking only some of the drugs, or taking them irregularly, is dangerous and can make the disease even more difficult or impossible to cure since the TB germ can become resistant to more drugs. A patient who does not take all of the drugs will continue to spread MDR-TB to members of the family and community. If the patient complains that there are “too many pills,” or that “treatment is too long” explain that, since TB is caused by a strong germ, many drugs are needed to get rid of it completely and for a long duration. Inform Patients about MDR-TB 35 MODULE D • Frequency and importance of required sputum examinations, meaning of results Every month during the course of MDR-TB treatment, the patient will be required to cough up sputum and collect it in a container for testing at the Treatment Center. Since TB germs cannot be seen with the naked eye, a laboratory technician must examine the sputum using a microscope. The microscope will allow the technician to see whether there are TB germs in the sputum and determine whether the patient is getting better. The sputum will then be sent for another test called a culture. The culture will allow the laboratory technician to see if any of the TB germs are growing and reproducing. For MDR-TB, a negative culture is the best way to determine if the patient is improving as hoped and responding to treatment. As the time for monthly sputum examination approaches, explain the need for the next examination: –– Every month the sputum must be tested. There should be no TB germs growing in the culture, or fewer TB germs than in the last test. If after the first 4 months, there are still TB germs growing in the culture, we will need to do further testing to make sure that the drugs you are taking are killing the TB germs. –– Once there is no growth of TB germs and there are no uncontrolled side effects, the patient is ready to continue treatment at a trained local Treatment Site through the process of decentralization. This means that the treatment is progressing well and the patient may continue to receive treatment at a facility that is more convenient for him. As long as there are no new problems with the treatment and the patient continues to come in for treatment, he will be able to continue to receive the drugs at the Treatment Site after staff have undergone training. • –– Once the patient has been decentralized to a Treatment Site, he will continue to come in weekly to the Treatment Center if the Treatment Site is closed on Saturdays and holidays unless there is an arrangement for a non-facility based treatment partner to do supervised treatment, e.g., homebased. At the minimum, the patient comes monthly for physical examination by the Treatment Center physician and for sputum follow-up. These examinations are very important. If no TB germs are growing in the culture, the patient continues the same treatment. If TB germs are still seen by the 4th month of treatment, the regimen may need to be changed according to certain factors. This change will be coursed through the consilium. –– Just before the end of treatment another sputum exam and culture will be conducted. If no TB germs are found growing in the final five cultures within the last twelve months, the patient can be considered cured. It is very important to have all of the culture examinations to know that the patient is cured. The importance of a health lifestyle Subsequent meetings with the patient provide many opportunities for the health worker to stress the importance of a healthy lifestyle. A healthy lifestyle is essential while on MDR-TB treatment. Regular moderate non-competitive exercise, eating a balanced diet, not smoking or drinking, not using illegal drugs, and sleeping 7-8 hours per day will help the body recover faster and make it stronger to combat other illnesses. ADRs often affect the patient’s activities of daily living. Take time to talk to and assist him in achieving a healthy lifestyle. The next pages present a brief Guide for Continuing Patient Information about MDR-TB. It summarizes how to use communication skills and how to provide information discussed in Section 5 when the MDR-TB patient comes for treatment. 36 Inform Patients about MDR-TB MODULE D Guide for continuing patient information about MDR-TB Use good communication skills at every visit. At different points in treatment, discuss the messages that are most relevant at the time. At every visit: Demonstrate a caring, respectful attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Be alert for side-effects: Ask general questions to identify side-effects: –– How are you feeling? –– Have you had any problems? Listen and look for major sideeffects: –– –– –– –– –– Deafness Jaundice (yellow skin or eyes) Vomiting repeatedly Difficulty with vision Altered mental state Respond as directed: If with mild ADRs, give reassurance and advice: –– –– –– –– If with loss of appetite, nausea, abdominal pain, take drugs with food. If joint pains, take pain reliever. If burning sensation in feet, take pyridoxine daily. If pain at the injection site, massage the site with warm cloth and switch sites If with moderate or severe ADRs refer immediately to the TC physician. As needed, remind patient of one or more relevant messages on the right: If patient has not yet brought household contacts for examination or testing All household contacts should be interviewed for symptoms of TB. Children younger than five years should undergo a tuberculin skin test (TST) and chest x-ray. All other contacts with cough of more than two weeks should undergo sputum examination and a chest x-ray. If patient is unfamiliar with the drugs, or a change occurs in the regimen Describe the type, color, and amount of drugs to be taken. Describe how often drugs should be taken and for how long. If the patient feels better Even after you feel better, you must continue taking drugs under supervision for the entire time. Taking only some of the drugs, or taking them irregularly, is dangerous and can make the disease even more difficult or impossible to cure since the TB germ can become resistant to more drugs. Since TB is caused by a strong germ, many drugs are needed to get rid of it completely. If the patient has missed a dose If the patient complains about continuing treatment If the patient is planning to travel or move At the Treatment Center, all the drugs for treatment are kept in a pouch with your name on it, so the health facility will have adequate drugs for you. To be cured, you must take all of the recommended drugs together under supervision, for the entire time. If you do not take all of the drugs, you will continue to spread TB to others and you will not be cured. Taking only some of the drugs, or taking them irregularly, is dangerous and can make the disease impossible to cure. During treatment you are strongly discouraged from traveling out of the area where the Treatment Center or Treatment Site is located to avoid treatment interruption. However, if travel cannot be avoided, please inform the Treatment Center or Site so that continuing treatment can be arranged if possible and a referral to another DOTS facility can be considered. However, if not possible, this will be considered a missed dose and the patient will just make this up at the end of the treatment course. Inform Patients about MDR-TB 37 MODULE D If the patient must be referred or hospitalized, explain that it is necessary to continue MDR-TB treatment while receiving referral care. The patient should return to the MDR-TB health facility to continue treatment. If admission is necessary, confine patients in hospitals which have links to Treatment Centers and Treatment Sites to facilitate DOT by trained health staff. Every month during follow-up sputum examination: Explain the need for the sputum examination. At the beginning of treatment A laboratory technician must examine sputum under a microscope to see if there are still TB germs and if you are getting better. Then they will attempt to grow the TB germs to see if any are still growing in your body. If the laboratory continues to see TB germs growing in your sputum, this is because the treatment takes a while to be effective. You may still be able to spread TB to others and therefore, you should be careful. If the laboratory cannot grow TB germs and this means that you will not spread TB germs to others, you may be allowed to continue treatment at a local Treatment Site. When the patient is eligible for the continuation phase If no growth of TB germs is seen for 4 consecutive months and the injectible has been given for at least 6 months, you will continue the same treatment but will no longer have to have the daily injection. When the patient continues to have positive culture for 4 months If growth of TB germs continues to be seen, the regimen may be changed because the drugs appear not to be working. Just before end of treatment If no growth of TB germs is found at this examination for at least five times in the last 12 months of treatment, you are considered to be cured. You are done with treatment and will continue to have sputum examinations post-treatment in order to make sure no TB germs will re-appear in your lungs. Explain the importance of a healthy lifestyle A healthy lifestyle is essential while on MDR-TB treatment. Regular moderate non-competitive exercise, eating a balanced diet, not smoking or drinking, not using illegal drugs, and sleeping 7-8 hours per day will help the body recover faster and make it stronger to combat other illnesses. Review: Ask checking questions (to ensure that the patient remembers important messages and knows what to do next). Reinforce earlier messages, or give more information as needed. 38 Inform Patients about MDR-TB MODULE D 6. Provide information about the decentralization process In the Philippines, all MDR-TB patients will be diagnosed and initially treated at Treatment Centers. Once the patient has been on treatment and his latest culture result is negative with at least two consecutive monthly negative smears, he may be eligible to be decentralized. Decentralization means that a patient will be referred to a trained DOTS facility, nearer his home to continue treatment until completion. An open discussion with the MDRTB patient must take place before the patient is officially decentralized or endorsed. When a patient is eligible for decentralization, the following points should be discussed with him or her: • What decentralization means Explain to the patient briefly what decentralization means by saying: “Congratulations!” “This is the first step along the road to being cured. When a patient is decentralized, it means that his treatment has been progressing well and he is no longer contagious. You will continue to receive treatment for MDR-TB but the treatment can be given closer to your home so you do not have to travel so far every day.” • The value and benefits of receiving MDR-TB services at the Treatment Site Describe further to the patient how the Treatment Center and Treatment Site will coordinate to ensure treatment that will be convenient for him by saying the following: “The Treatment Site will be easier to access than the Treatment Center because it is usually nearer. A Treatment Site is a smaller facility with staff that has been trained to attend to your needs. You will still come for monthly visits to this Treatment Center where the physician will examine you. If you have any problems or need specialized service you can be referred back to this Treatment Center any time.” • The different responsibilities of the patient at the Treatment Site, and the treatment and follow-up exams that will continue to take place at the Treatment Center Cite the responsibilities of the Treatment Site by telling the patient the following: “The Treatment Site staff will be responsible for providing supervised treatment to you as well as maintaining good records of your treatment. If you have a side effect from the drugs you are taking, or you do not feel well, you must inform the staff at the Treatment Site so they can make the necessary referrals and help you quickly. You will come to this Treatment Center every month or whenever you have serious or severe side effects which are not expected at this point. A physical exam will be done by the physician and he will make sure that your treatment is proceeding well.” • The patient’s feelings, thoughts about the decentralization plan Many patients prefer to receive treatment in facilities near their places of residence. There are patients though that during the course of treatment, the patient may already feel attached and is comfortable going the Treatment Center for supervised treatment. Most of the time, there is only one MDR-TB patient in a Treatment Site at any given time. Inform Patients about MDR-TB 39 MODULE D The decentralization process will begin once the patient has completed the criteria for decentralization. Agree with the patient and the other persons involved on the date and time of endorsement. Take time to listen to the patient’s thoughts and feelings and tell him the following: “Someone from this Treatment Center together with the City NTP Coordinator will go with you to the Treatment Site the first day to make sure everything goes smoothly. Do you have any questions or concerns about this process?” • The possibility of scheduling the patient for psychosocial counseling For patients who need psychosocial counseling, say the following: “We can schedule a visit to a psychologist or a health counselor if you feel that it would help you to be able to continue treatment at your local Treatment Site. You can always let us know if you need additional support to help you along with your treatment.” The next pages present a brief Guide for Patient Information about the decentralization process. This guide presents how to use communication skills and how to provide information discussed in section 6 when the MDR-TB patient has completed treatment at the Treatment Center. The process of decentralization is discussed in more detail in Module E: Ensure Continuation of MDR-TB Treatment. 40 Inform Patients about MDR-TB MODULE D Guide for patient information about decentralization When a patient is to be decentralized, he may feel hesitant to leave the Treatment Center since he has been coming for so long or he may be very pleased. Congratulate the patient, explain the situation and the next steps. Use good communication skills. Make sure you congratulate the MDR-TB patient who has successfully completed the first part of treatment. He should feel pleased that he is progressing well and that he will be able to receive treatment closer to home. Demonstrate a caring, respectful attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask the patient questions such as: –– –– How do you feel becoming culture-negative? Have you heard of the decentralization process? Then give relevant messages: Congratulations! This is the first step along the road to being cured. Now that you will be decentralized, it means that your treatment has been progressing well and you are no longer contagious. You will continue to receive treatment for MDR-TB but the treatment can be given closer to your home so you do not have to travel so far every day. Inform the patient about how the decentralization process will help the MDR-TB treatment and be beneficial for the patient. The Treatment Site will be easier to access than the Treatment Center because it is usually nearer your home. A Treatment Site is a smaller facility with staff that has been trained to attend to your needs. You will always come for monthly visits to this Treatment Center where the physician will examine you. If you have any problems or need specialized service you can be referred back to this Treatment Center any time. Inform the patient about the responsibilities of the Treatment Site and the Treatment Center once the patient is decentralized. The Treatment Site staff will be responsible for providing supervised treatment to you as well as maintaining good records of your treatment. If you have a side effect from the drugs you are taking, or you do not feel well, you must inform the staff at the Treatment Site so they can make the necessary referrals and help you quickly. You will come to this Treatment Center every month for a physical exam by the physician and make sure that your treatment is continuing` to proceed well. Inform the patient about the dates and ask them if they have any additional concerns or questions. The decentralization process will begin once the patient has completed the criteria for decentralization. Agree with the patient and the other persons involved on the date and time of endorsement. Someone from this Treatment Center together with the City NTP Coordinator will go with you to the Treatment Site the first day to make sure everything goes smoothly. Do you have any questions or concerns about this process? How do you feel about this change? Would you like to talk to anyone else about it? We can schedule a visit to psychologist or a health counselor if you feel that it would help you to be able to continue treatment at your local Treatment Site. You can always let us know if you need additional support to help you along with your treatment. Inform Patients about MDR-TB 41 MODULE D 7. Inform MDR-TB patients, family, and contacts about HIV and pregnancy Inform MDR-TB patients, their families and contacts about HIV and its relationship to TB and MDR-TB in particular. Patients with both HIV and MDR-TB are in great danger of dying and must be followed up very closely. Where services are available, Provider-Initiated Counseling and Testing (PICT) should be offered to all TB /MDRTB patients and counseling for HIV prevention should be undertaken. Encourage the patient to ask questions throughout treatment. Child-bearing women are encouraged to seek counseling for birth control because MDR-TB poses a great risk to the lives of the mother and the fetus. However, pregnancy is not a contraindication for treatment. Messages about HIV • • An HIV-infected person is much more likely to develop TB, MDR-TB, or even XDR-TB. • MDR-TB can be cured in HIV-infected persons, but it is more difficult and the chance of cure is lower. Likewise, XDR-TB has a very high mortality among HIV-infected persons. • There are benefits to knowing the HIV status: –– –– –– It facilitates prevention, diagnosis, and treatment of complications. It enables planning for management and care of the patient’s family and children. It is important to know whether you also need anti-retroviral (ARV) treatment • To find out your HIV status, counseling and testing will be facilitated by the Treatment Center. Results will be dealt with utmost confidentiality. • To prevent transmission of HIV and other sexually transmitted infections (STIs), all sexually active people should use condoms for casual sexual contacts, no matter what their HIV status is. Messages about HIV and pregnancy • If you are pregnant, an additional benefit to knowing your HIV status is that it may be possible to provide drug therapy to prevent transmission of HIV to your child. • All children born to an HIV-positive mother will test positive for the first 7 months of life because of antibodies that the infant receives from the mother. • The chances that children born to HIV-positive mothers will be infected with HIV and continue to be HIV-positive are 1 in 3. The next page presents a brief Guide for informing patients about TB and HIV. This guide summarizes how to use communication skills, questions, and messages discussed in section 7. 42 Inform Patients about MDR-TB MODULE D Guide for informing patients about HIV and Pregnancy Use this guide for MDR-TB patients in areas where HIV is common. Note the special messages for pregnant women. At every visit: Demonstrate a caring, respectful and friendly attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask MDR-TB patients: Then give relevant messages: Do you know your HIV status? There are benefits to knowing your HIV status: –– to help prevent, diagnose, and treat complications –– to enable planning for care of your family and children –– to know whether you need anti-retroviral (ARV) treatment If known or unknown An HIV-infected person is more likely to develop TB. MDR-TB can be cured in HIV-infected persons, but it is more difficult and the chance of cure is lower. If unknown To prevent transmission of HIV and other STIs, all sexually active people should use condoms in case of casual sex encounters, no matter what their HIV status. Explain options available locally for HIV testing. If the MDR-TB patient is a woman of childbearing age, also ask: Are you pregnant? An additional benefit to knowing your HIV status is that it may be possible to provide drug therapy to prevent transmission of HIV to your child. If pregnant All children born to an HIV-positive mother will test positive for the first 7 months of life because of antibodies received from the mother. The chances that children born to HIV-positive mothers will be infected with HIV and continue to be HIV-positive are 1 in 3. If pregnant and HIV status unknown Refer for Provider-Initiated Counseling and Testing (PICT). Review: Ask checking questions (to ensure that the patient remembers important messages and knows what to do next). Reinforce earlier messages, or give more information as needed. Now do Exercise C When you have reached this point in the module, you are ready to do Exercise C. Exercise C is a written exercise. Inform your facilitator when you have finished the exercise. Inform Patients about MDR-TB 43 MODULE D Exercise C Written Exercise - Problem Solving In this exercise, you will think of ideas to help a number of possible problematic situations. For each situation listed in the left column, briefly describe what you would say or do. What would you say or do if....? Briefly write your ideas below: A patient wants to take the drugs unsupervised at home. The patient has missed 1 day of treatment and reported the following day. The patient does not want to have sputum examinations after 8 months of treatment. The patient says her husband, who has cough, does not have time to be tested for MDR-TB. The patient is afraid to tell her family that she has MDR-TB. A family member says that the MDR-TB patient cannot stay at home because the children will catch MDR-TB. When you have finished this exercise, review your answers with a facilitator. Then read until the next exercise. 44 Inform Patients about MDR-TB MODULE D 8. Provide education at the end of treatment The last dose of treatment that an MDR-TB patient takes is not the actual end of the management of the patient. Patients who fulfill the criteria for cured or treatment completed will continue to have post-treatment follow-up over the next two years to watch out for relapse, which is an uncommon occurrence among cured MDR-TB patients. At the time the last dose of treatment is given you should sit with the patient, congratulate him for all of his efforts and determination or comfort him if the treatment failed. You should provide information about the following: • Support options depending on outcome þþ For patients whose outcome is cured or treatment completed: “Congratulations! You have just finished a long and difficult treatment. I am very proud of the commitment and dedication you have shown over the last two years. You no longer have to take any medications. Just to make sure that you continue to be well, you will have to have sputum exams every six months for the next two years.” “You will receive a certificate for successfully completing the treatment regimen. You now have the opportunity to help other patients attain the same success as you had by becoming a TB champion and advocate or by becoming a treatment partner for others.” Summary: For patients whose outcome is cured or treatment completed, remind them: þþ to adhere to the recommended 6-monthly follow-up visits after treatment for the next two years. þþ go to the Treatment Center immediately even out of their scheduled follow-up if symptoms develop or bring their household contacts if they develop symptoms þþ For patients whose outcome is treatment failure: The patient will need a support system and family counseling to prepare for the disclosure of treatment failure to the patient. “You have been through so many difficulties with your medicines. Unfortunately, they seem not to be helping you. It is time that you take a break from your treatment. We will continue to provide supportive therapy as necessary. ” “It is best that you avoid mingling with many people and to avoid sleeping with others in the same room if it is possible. Cover your mouth and nose when you cough or sneeze. Open the windows in your room to allow fresh air to flow out, if possible with the help of an electric fan directing the air to the outside.” Summary: For patients whose outcome is treatment failure, discuss with patients: þþ why they need to stop treatment at this point þþ the kind of supportive treatment they will benefit from þþ the basic infection control measures to prevent transmission to other people • Instruct the patient to adhere to the recommended follow up visits after treatment “To be sure that you continue to be well, we need to see you every six months for sputum test and culture, and chest x-ray. We will send you a reminder if you fail to come in on the expected date.” For patients who become attached to their medicines and are scared to stop taking them: “Your sputum is now clear of TB germs and you have gained weight to show that you have really responded to treatment. Continuing your medicines will not be necessary and will not give you further benefit. You can now safely stop the medicines and return for your follow -up visits to ensure that you continue to be well.” Inform Patients about MDR-TB 45 MODULE D • Return to the Treatment Center immediately if symptoms develop or if contacts develop symptoms “If you begin to develop any of the TB symptoms such as cough, back or chest pain, blood in the phlegm, unexplained fever or weight loss, or night sweats, you must let us know immediately so we can conduct the proper tests to see what the problem is. If any of your household contacts have any TB symptoms you should bring them in as well and let a health care worker know that you at one point had MDR-TB and that the person is a contact of a former MDR-TB patient.” • The importance of a healthy lifestyle A healthy lifestyle is good to have at all times but during and after a long medical treatment such as the one for MDR-TB, exercising, eating healthy food, not smoking or drinking and getting enough rest will help the body recover and make it stronger to combat other illnesses that might come up. People with poor immune systems and weak defenses get sick from TB more often than healthy people. Now that you are cured, try to maintain a healthy lifestyle to keep up your good health. Summary: A healthy lifestyle includes: • Regular non-competitive exercise • Balanced diet • No smoking, no drinking, no drugs • Enough sleep: 7-8 hours per day The next pages present a brief Guide for Patient Information at time of Discharge. It summarizes how to use communication skills and how to provide information discussed in section 8 when the MDR-TB patient has completed treatment. 46 Inform Patients about MDR-TB MODULE D Guide for patient information at the end of treatment This is the last time you will be providing patient information to the patient. Use good communication skills. Make sure you congratulate the MDR-TB patient who has been cured or successfully completed treatment. They should feel very happy. Demonstrate a caring, respectful attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask the patient questions such as or discuss the following: Then give relevant messages: For patients whose outcome is cured or treatment completed: How do you feel about finishing treatment? “Congratulations! You have just finished a long and difficult treatment. I am very proud of the commitment and dedication you have shown over the last two years. You no longer have to take any medications. Just to make sure that you continue to be well, you will have to have sputum exams every six months for the next two years.” “There are patients who may have permanent CXR findings.” This only means that after a long time that they have had TB, there has been scarring on the lungs and that this does not mean that they are not yet completely cured or that the disease will recur. “You will receive a certificate for successfully completing the treatment regimen. You now have the opportunity to help other patients attain the same success as you had by becoming a TB champion and advocate or by becoming a treatment partner for others.” For patients who become attached to their medicines and are scared to stop taking them: “Your sputum is now clear of TB germs and you have gained weight to show that you have really responded to treatment. Continuing your medicines will not be necessary and will not give you further benefit. You can now safely stop the medicines and return for your follow -up visits to ensure that you continue to be well.” How do you think we can make sure that all of the MDR-TB germs have been killed? Instruct patient to adhere to the recommended follow-up visits after treatment To make sure that you continue to be well, you must come every six months to have a sputum smear and culture, and chest x-ray for 2 years. We will send you a reminder if you fail to come on the expected date. Once you have TB symptoms, you need to consult at the Treatment Center at once even if this is outside your scheduled follow-up. Inform Patients about MDR-TB 47 MODULE D Ask the patient questions such as or discuss the following: Then give relevant messages: For patients whose treatment outcome is failed. The patient will need a support system and family counseling to prepare for the disclosure of treatment failure to the patient. Discuss the reason for stopping treatment “You have been through so many difficulties with your medicines. Unfortunately, they seem not to be helping you. It is time that you take a break from your treatment. We will continue to give you advice for supportive therapy as necessary. ” “It is best that you avoid mingling with many people and to avoid sleeping with others in the same room if it is possible. Cover your mouth and nose when you cough or sneeze. Open the windows in your room to allow contaminated air to flow out, if possible with the help of an electric fan directing the air to the outside.” Seek attention immediately if symptoms develop or if contacts develop symptoms What should you do if you or someone in your house develops TB symptoms? If you begin to develop any of the TB symptoms such as cough or blood in the phlegm, you must let us know immediately so we can conduct the proper tests to see what the problem is. If any of your household contacts have any TB symptoms you should bring them in either to the Treatment Center or to any DOTS facility and let a health care worker know that you at one point had MDR-TB and that the person is a contact of a former MDRTB patient. The importance of a healthy lifestyle How will you keep your body healthy? “You need to take good care of your body to keep it healthy. You can do this by regular moderate non-competitive exercise, eating a balanced diet, not smoking or drinking and sleeping 7-8 hours per day. These will help the body recover completely and make it stronger to combat other illnesses that might come up. People with poor immune system and weak defenses get sick from TB more often than healthy people. Now that you are cured, try to maintain a healthy lifestyle to keep up your good health.” “There is no lifetime immunity against TB. You can still be infected if you are exposed to somebody who has TB and is not on treatment. Hence, it is important to bring your symptomatic household contacts to the Treatment Center at once so that they can be cured like you.” Now do Exercises D When you have reached this point in the module, you are ready to do Exercise D. This exercise is a role play on patient information sessions with MDR-TB patients. 48 Inform Patients about MDR-TB MODULE D Exercise D Role Play – Patient information about TB After having gone through Section 8, you are ready for Exercise D. For this exercise your facilitator will again divide you into groups of three to enact a role play. As in Exercise B, one person will act as the health worker, one as the patient, and one as an evaluator. The health care worker will talk to the patient as he would during treatment. Participants in each group will act the first scenario in Exercise C (the patient wants to take the drugs unsupervised at home) making sure that the important and relevant point(s) are discussed. The evaluator will share his comments on how the health worker did in responding to the patient, and provides constructive feedback for the provider. Then read until the end of the module. Inform Patients about MDR-TB 49 MODULE D Summary of important points • • • Good communication is needed to provide information about TB and its treatment and to encourage patients to continue treatment without interruption. Use the following communication skills when informing patients about MDR-TB: –– Ask questions and listen. –– Demonstrate a caring, respectful attitude. –– Praise and encourage the patient. –– Speak clearly and simply. –– Encourage the patient to ask questions. –– Ask checking questions (open-ended questions to check understanding). During the first meeting with an MDR-TB suspect discuss the following important topics: –– Possible diagnosis of MDR-TB and XDR-TB –– Stopping present TB treatment, if applicable –– Diagnostic tests to be done (Smear, culture, DST, x-ray) –– Timelines for receiving test results –– Call the Treatment Center for test results –– Supervised treatment for at leaast 18 months at a Treatrment Center and Treatment Site –– How to stop spreading TB at home while waiting for test results –– What to do if the patient coughs up blood Once the Consilium has approved treatment for MDR-TB, discuss the following important topics: Ask questions to find out the patient’s current knowledge about MDR-TB. Then give information that is needed and correct any misconceptions. –– What is drug-resistant TB? –– What is the difference between TB and drug-resistant TB? –– How drug-resistant TB spreads? –– How to prevent TB from spreading –– Why do you have drug-resistant TB? –– What is treatment like for drug-resistant TB? –– Necessity of supervised treatment –– Preventing the spread of drug-resistant TB –– The Patients’ Charter –– Support services –– Household contact tracing –– What to expect; what to do next In areas where HIV services are available, also discuss HIV and TB. • Provide information on the drugs the patient will receive by using the Drug Flipchart. • At subsequent meetings with the MDR-TB patient, reinforce previous messages and discuss the following topics as relevant: 50 Inform Patients about MDR-TB MODULE D • • –– Adverse drug reactions (if reported/observed) –– Importance of continuing treatment –– What happens if the patient takes only some of the drugs or stops treatment –– Frequency and importance of required sputum examinations, meaning of results –– Importance of a healthy lifestyle When a patient is eligible for decentralization, the following points should be discussed with him or her: –– The Patient is a candidate for decentralization and what that means –– The possibility of scheduling the patient for psychosocial counseling –– The value and benefits of receiving MDR-TB services at the Treatment Site –– The different responsibilities of the patient at the Treatment Site, the treatment and the schedule of follow-up exams to take place at the Treatment Center –– The patient’s feelings, thoughts about the decentralization plan At the time the last dose of treatment is given you should sit with the patient, congratulate him for all of his efforts and determination or comfort him if the treatment failed. You should provide information about the following: –– Congratulations for the cured or treatment completed patient –– Instruct patient to adhere to the recommended follow-up visits after treatment –– Seek attention immediately if symptoms develop or if household contacts develop symptoms –– The importance of a healthy lifestyle –– Infection control measures for the failed patient –– Support options for the failed patient Inform Patients about MDR-TB 51 MODULE D Self-assessment questions Answer the self-assessment questions below to check what you have learned. Then compare your answers to those on pages 54-55. 1. List six communication skills that can be used when informing patients about MDR-TB. –– –– –– –– –– –– 2. Write two questions that could be asked in order to determine a patient’s current knowledge about MDR-TB. –– –– 3. A health worker has just explained the following to Mrs. Bautista, a new MDR-TB patient: She will need to come to the Treatment Center every day except Sundays to take drugs for MDR-TB. She will take 4 different drugs including one injection each time. The Treatment Center is open from 9:00 a.m. until 5:00 p.m. Monday to Saturday. Write two checking questions that the health worker might ask this patient: –– –– 4. Tick information that should be discussed during the screening of the MDR-TB suspect: (More than one may be ticked.) What is MDR-TB? XDR-TB? Necessity of supervised treatment How to prevent MDR-TB from spreading Who else should be tested for MDR-TB? Frequency of required follow-up sputum examinations 52 Inform Patients about MDR-TB MODULE D 5. There are minor side-effects for which reassurance and simple remedies can be provided. There are major sideeffects that require stopping anti-TB drugs and referral to a clinician. Beside each side-effect listed below, write “major” or “minor.” Itching of skin, skin rash Dizziness Seizures Blurring of vision (optic neuritis) Joint pains Jaundice Anorexia (loss of appetite) 6. Rewrite the following statement in simpler language: “Uninterrupted treatment, as prescribed, is necessary; otherwise the disease will become further resistant.” “Kailangan huwag lumiban sa pag-inom ng gamot dahil pinapatapang lamang ang mikrobyo hanggang sa hindi na siya tatablan ng mga gamot na ito.” 7. Write “true” or “false” beside each of the following statements: An HIV-infected person is more likely to develop TB. MDR-TB can be cured in HIV-infected persons, but it is more difficult and the chance of cure is lower. All children born to HIV-positive mothers will be infected with HIV. All sexually active people should use condoms in case of casual sex to prevent HIV transmission. Now compare your answers with those on the next pages. Inform Patients about MDR-TB 53 MODULE D Answers to self-assessment questions If you had difficulty answering any question, turn back and study the section indicated. If you do not understand something, discuss it with a facilitator. 1. Six communication skills taught in this module are: (See section 1) –– –– –– –– –– –– Ask questions and listen. Demonstrate a respectful, caring attitude. Praise and encourage the patient. Speak clearly and simply. Encourage the patient to ask questions. Ask checking questions. 2. You should have written two questions such as any two of the following: (See 1.1) –– –– –– –– What do you understand multidrug-resistant tuberculosis, or MDR-TB, to be? How about XDR-TB? What do you think causes MDR-TB? How is it spread? Have you ever known anyone who had MDR-TB? What happened to that person? What have you heard about curing MDR-TB? 3. There are many checking questions that could be asked. Questions should be open-ended, beginning with words like “who, what, when, where, why.” (See 1.6) Examples of appropriate checking questions are: –– –– –– When will you return for the next treatment? What time will you come? How many drugs will you take? 4. All of the information should be discussed at the first session except the last 2 items. Contact tracing and the frequency of required follow-up sputum examinations should be discussed later, when they are more relevant. It would be too much information to include in the first meeting. (See sections 3 and 5) __√__ What is MDR-TB? XDR-TB? __√__ Necessity of supervised treatment __√__ How to prevent MDR-TB from spreading __X__ Who else should be tested for MDR-TB? __X__ Frequency of required follow-up sputum examinations 5. Selected side-effects: (See section 5) Minor Itching of skin, skin rash Minor Dizziness Major Seizures Major Difficulty with vision (optic neuritis) Minor Joint pains Major Jaundice Minor Anorexia (loss of appetite) 54 Inform Patients about MDR-TB MODULE D 6. Answers will vary. (See sections 1.4 and 3) Example of simpler language related to continuing treatment: You must take all of the drugs for the entire course of treatment. If you take the drugs irregularly, or if you stop taking them, the disease will become more difficult or even impossible to cure. 7. Answers: (See section 4) True An HIV-infected person is more likely to develop TB. True TB can be cured in HIV-infected persons, but it is harder to treat and the chance of cure is lower. False All children born to HIV-positive mothers will be infected with HIV. Actually, children born to HIV-positive mothers will test HIV-positive for the first 7 months of life, due to antibodies from the mother. After the first 7 months, the chances are 1 in 3 that children born to HIVpositive mothers will continue to be HIV-positive. True All sexually active people should use condoms during casual sexual contact to prevent HIV transmission. End of Module D Congratulations on finishing this module! Inform Patients about MDR-TB 55 MODULE D References 1. 4th Site Visit, Green Light Committee Report, MMC DOTS Clinic, January 2003 2. The Patients’ Charter for Tuberculosis Care, World Care Council 2006 3. Guidelines for the Implementation of the Programmatic Management of Drug-resistant Tuberculosis (PMDT). Administrative Order No. 2008-0018. Department of Health, Manila, Philippines, May 26, 2008. 4. Interim Plicies and Guidelines in the Collaborative Approach of TB and HIV Prevention and Control. Adiministrative Order No. 2008–0022. Department of Health, Manila, Philippines, 2008. 5. Guidelines for the Programmatic Management of Drug-resistant Tuberculosis. World Health Organization, Geneva, Switzerland, 2006. (WHO/HTM/TB.2006.361). Annexes A: The Patients’ Charter for Tuberculosis Care (Patients’ Rights and Responsibilities) B: Gabay para sa unang pakikipag-usap sa pasyente tungkol sa posibilidad ng pagkakaroon ng MDR-TB C: Script for Video Demonstration: Initial patient information about MDR-TB D: Text of MDR-TB Drug Flip Chart 56 Inform Patients about MDR-TB MODULE D Annex A: The Patients’ Charter for Tuberculosis Care (Patients’ rights and responsibilities) Adapted from: The World Care Council, 2006 Before an MDR-TB patient begins treatment, a health care worker should sit down with him or her and discuss the Patients’ Charter. The following is an excerpt from “The Patients’ Charter for TB Care” which outlines the rights and responsibilities of people with TB. It empowers people with the disease and their communities through this knowledge. Initiated and developed by patients around the world, the Charter makes the relation between those affected by the disease and health care providers a mutually beneficial one. Knowing their rights informs patients on what they can expect and ask for from the health care system. Knowing their responsibilities informs them what is expected of them as members of the community. The document should be reviewed with the patient and any content the patient does not understand should be explained. Patients’ Rights The patient has the right to: 1. Care Free and equitable access to TB diagnosis and treatment Receive medical advice and treatment Benefit from health outreach, education, and prevention campaign 2. Dignity Treated with respect and dignity Receive TB services without stigma, prejudice or discrimination by health providers and authorities Quality healthcare in a dignified environment, with moral support from family, friends and the community 3. Information Available TB services Responsibilities, engagements and direct or indirect costs involved Medical condition – diagnosis, prognosis and treatment required Medication – name, dosage, action, interaction, side effects, impact on other conditions Access to medical information Share experiences with peers and other patients and to voluntary counseling 4. Choice Second medical opinion, with access to previous medical records Accept or refuse surgical interventions if chemotherapy is possible Choose whether or not to take part in research programs without compromising care 5. Confidentiality of information Have personal privacy, dignity, religious beliefs and culture respected Have information relating to the medical condition kept confidential and released to other authorities contingent upon the patient’s consent Inform Patients about MDR-TB 57 MODULE D 6. Justice Make a complaint through channels provided for this purpose by the health authority Have any complaint dealt with promptly and fairly Appeal to a higher authority if the above is not respected and to be informed in writing of the outcome 7. Organization Join or establish organizations of people with or affected by TB Seek support for the development of patient clubs and community-based associations Participate as stakeholder in the development, implementation, monitoring and evaluation of TB policies and programs with local, national and international health authorities 8. Security Job security after diagnosis or appropriate rehabilitation upon completion of treatment Nutritional security or food supplements if needed to meet treatment requirements Patients’ Responsibilities The patient has the responsibility to: 1. Share information Provide the healthcare giver as much information as possible about present health, past illnesses, any allergies and any other relevant details Provide information to the health provider about contacts with immediate family, friends and others who may be vulnerable to TB or may have been infected by contact 2. Follow treatment Follow the prescribed and agreed treatment plan Comply with the instructions given to protect the patient’s health and that of others Inform the health provider of any difficulties or problems with following treatment or if any part of the treatment is not clearly understood 3. Contribute to community health Contribute to community well-being Show consideration for the rights of other patients and healthcare providers 4. Show solidarity Showing solidarity with other patients, marching together towards cure Share information and knowledge gained during treatment and to pass this expertise to others in the community, making empowerment contagious Join in efforts to make the community tuberculosis free 58 Inform Patients about MDR-TB MODULE D Annex B: Gabay para sa unang pakikipag-usap sa pasyente tungkol sa posibilidad ng pagkakaroon ng MDR-TB Gamitin ang gabay na ito upang maalala ang mga dapat itanong at sabihin sa unang pakikipag-usap sa pasyenteng pinagdududahan na may MDR-TB. Ang nasa kaliwang bahagi ay mga halimbawa ng mga tanong para sa mga pasyenteng pinagdududahan na may MDR-TB. Ang nasa kanang bahagi ay mga mensaheng may kaugnayan sa mga tanong sa kaliwa. Sa kabuuan ng pag-uusap: Ipakita ang pag-aaruga, respeto, at mabuting pakikipagkapwa. Purihin at bigyan ng pag-asa ang pasyente. Magsalita ng malinaw at gumamit ng mga salitang madaling maintindahan. Hikayatin ang pasyente na magtanong. Itanong sa pasyente Pagkatapos, magbigay ng mga mensahe tungkol sa: ang mga sumusunod: Posibleng pagkakaroon ng MDR-TB Ano sa tingin mo ang dahilan at pinapunta kayo dito? Ano sa tingin mo ang sanhi ng inyong karamdaman? Kayo ay pinapunta dito sa Treatment Center dahil kayo ay maaaring may multidrugresistant TB o MDR-TB. Posibleng may MDR-TB ang mga pasyenteng: • patuloy na may mga sintomas ng TB habang ginagamot • nagkaroon na dati ng gamutan para sa TB • nagkaroon ng matagal na kasama na may MDR-TB Posible na ang mga gamot na inyong iniinom dati o ngayon ay hindi na epektibo sa pagpatay ng mikrobyong sanhi ng TB. Mayroong ilang mga pagsusuri na kinakailangang gawin sa laboratoryo upang malaman kung kayo ay may MDR-TB. Kapag natiyak na mayroon kayong MDR-TB, ito ay nagagamot kapag kayo ay iinom ng gamot araw-araw sa loob ng 18-24 na buwan. Paghinto ng kasalukuyang paggagamot para sa TB Sa pagkakaalam mo, bakit ang iyong gamutan ay hindi epektibo? Para sa inyo na: –– hindi na nagagamot ng Category II ng DOTS –– mga nagkaroon ng dalawa o higit pa na gamutan para sa TB, ay pinapayuhang huminto sa pag-inom ng mga gamot para sa TB habang isinasagawa ang mga pagsusuri sa laboratoryo para sa MDR-TB. Ito ay sa kadahilanang ang mga gamot na inyong iniinom sa kasalukuyan ay hindi epektibo at pwedeng lumubha ang inyong sakit kung ipagpatuloy ninyo ang pag-inom ng mga ito. Ang posibleng dahilan kung bakit hindi na epektibo ang iyong dating gamutan sa TB ay maaaring “resistant” o hindi na kayang mapatay ang iyong TB germs ng mga dati mong gamot. Kung ikaw ay mapatunayang may MDR-TB, ikaw ay bibigyan ng ibang uri ng gamutan. Pagsimula ng Category II Sa inyo na: • nagbalik ang sakit matapos gumaling o nakakumpleto na ng gamutan dati sa TB (relapse), • dating ginagamot sa TB ngunit hindi tinapos o hindi kinumpleto ang paginom ng gamot (Return After Default), • hindi napagaling ng Category I (failed Category I) ng DOTS, • nagkaroon na ng dating gamutan sa TB na labas sa programa ng DOTS o iba pa ay pinpayuhang simulan sa Category II habang hinihintay pa ang paglabas ng resulta ng DST. Inform Patients about MDR-TB 59 MODULE D Itanong sa pasyente Pagkatapos, magbigay ng mga mensahe tungkol sa: ang mga sumusunod: Paano natin malalaman na kayo ay may MDR-TB? Mga pagsusuri na gagawin sa laboratoryo (DSSM, TB Culture, DST) Gaya ng pagsusuri sa TB, kayo ay aming kokolektahan ng plema. Ang unang koleksyon ay gagawin ngayong araw at ang susunod na koleksyon ay gagawin mo bukas ng umaga sa iyong paggising. Kailangang ilagay mo ang pinaglagyan ng iyong sampol ng plema sa isang lalagyan na may yelo habang dinadala ito sa Treatment Center. Dalhin mo ang iyong sampol ng plema sa Treatment Center sa pinakamaagang panahon na madadala mo ito. (Sabihin sa pasyente ang oras ng pagbubukas ng Treatment Center) Ang iyong sampol ng plema ay isasailalim sa iba’t ibang uri ng pagsusuri, ang direct sputum smear microscopy (DSSM) at culture para matukoy kung mayroon ngang mikrobyo ng TB sa iyong baga. Ang TB Culture ang siyang makakatiyak kung mayroong buhay na mikrobiyo ng TB sa iyong plema. Kung napatunayan sa TB Culture na mayroong buhay na mikrobiyo ng TB sa iyong plema, isasailalim naman ito sa ikatlong pagsusuri na kung tawagin ay “drug susceptibility test” o “DST”. Ang DST ang magtutukoy kung anu-anong mga gamot ang makakapatay sa mikrobiyo ng TB at kung anu-anong mga gamot ang hindi ito kayang patayin. Kapag lumabas na ang resulta ng DST, malalaman na namin kung ano ang pinakaepektibong gamutan para ikaw ay mapagaling. Panahon ng paglabas ng resulta ng mga pagsusuri “Maaari kang tumawag para sa resulta ng iyong DSSM 4-5 araw matapos mong makapagpasa na ikalawang sampol ng plema.” Kailan ninyo malalaman ang resulta ng mga pagsusuri? Ang resulta ng TB Culture ay maaaring lumabas pagkatapos ng 3-3.5 buwan mula nung makolektahan ng plema.. Ang resulta ng DST ay maaring lumabas 4-5 buwan mula nung makolektahan ng plema. Maaari kang tumawag sa ganitong panahon. Kung lumabas sa resulta ng iyong DST ay ikaw ay may MDR-TB at hindi ka nakatawag, kami ay tatawag din sa inyo o magpapadala ng sulat sa iyong sinulat na tirahan sa iyong MDR-TB Screening Form.” Paano ninyo matatawagan ang Treatment Center para sa mga resulta? Paano ginagamot ang MDR-TB? 60 Inform Patients about MDR-TB Pagtawag sa Treatment Center para sa resulta “Maaari kang tumawag sa numerong (ibigay ang numero ng telepono ng Treatment Center) para sa mga resulta. Kailangan mong ibigay ang iyong pangalan at ikaw ay bibigyan ng mga dapat gawin sa panahon ng paglabas ng mga resulta.” Tutok gamutan sa di bababa sa 18 buwan sa Treatment Center Kapag ikaw ay napatunayan na may MDR-TB, mangangailangan ka ng di bababa sa 18 buwan na patuloy na gamutan gamit ang 2nd line drugs. Ang pagtigil sa gamutan ay magpapalala sa iyong kalagayan dahil sa pagtapang ng mikrobyo na maaaring magdulot ng walang gagalingan. Ang mga 2nd line na gamot para sa TB ay napakamahal at di madaling inumin dahil sa mga kakaibang epekto sa katawan. Dahil dito, ikaw ay kinakailangang pumunta sa Treatment Center araw-araw o sa isang sinanay na pasilidad upang ikaw ay masubaybayan ng maigi. MODULE D Itanong sa pasyente Pagkatapos, magbigay ng mga mensahe tungkol sa: ang mga sumusunod: Paano mapipigilan ang pagkalat ng sakit na TB sa bahay habang naghihintay sa paglabas ng resulta ng mga pagsusuri. Upang mapigilan ang pagkalat ng sakit na TB sa ibang tao sa bahay at sa komunidad: Paano ninyo maiwasan ang pagkalat ng TB o MDR-TB? –– –– –– Takpan ang iyong bibig at ilong ng tisyu o panyo kapag uubo o babahing. Buksan ang bintana at pintuan upang makapasok ang sariwang hangin sa loob ng bahay. Makakatulong kung itatapat ang electric fan na ang hangin ay palabas ng bahay. Huwag matulog sa iisang kuwarto kasama ang pasyente kung maaari. Hindi kailangan ng espesyal na pagkain o banlian ang mga pinagkainan o iba pang kagamitan ng pasyente. Ano ang inyong gagawin kung kayo ay dumura ng dugo? Ano ang gagawin kung ang pasyente ay dumura ng dugo? “Ipaalam sa Treatment Center kung ang pasyente ay dumura ng dugo. Kumunsulta sa Treatment Center or sa pinakamalapit na doktor o ospital.” Muling balikan: Tanungin muli ang pasyente upang masigurong naunawaan at natandaan ang mga importanteng mensahe at malaman kung ano ang susunod na hakbang na kailangan pang gawin. Muling banggitin ang mga naunang mensahe at magbigay ng karagdagang impormasyon kung kinakailangan. Inform Patients about MDR-TB 61 MODULE D Annex C: Script for Video Demonstration: Initial patient information about MDR-TB Mrs. Reyes has been approved for treatment by the Consilium for MDR-TB. She was called and asked to come in to the Treatment Center. Today Mrs. Reyes, with his husband, Leonito, has returned to discuss the beginning of treatment for MDR-TB. Dr Lua: Good morning, Mr and Mrs Reyes. Have a sit. How are you feeling today, Mrs Reyes? Magandang umaga, Mr. Reyes at Mrs. Reyes. Maupo ho kayo. Kamusta ho ang pakiramdam ninyo ngayon, Mrs Reyes? Mrs Reyes: I still have trouble breathing, and I am coughing a lot. Nahirapan pa din akong huminga, at lagi akong umuubo. Mr Reyes: She is coughing more nowadays, Dr. Lua. Mas madalas po ang pag-ubo niya ngayon, Dr. Lua. Dr Lua: I am sorry you do not feel well. On the other hand, I am glad you and your husband have returned today. I have some important news for you. Nalulungkot ako na hindi maganda ang pakiramdam mo. Ngunit, natutuwa ako na nandito kayo ngayon. Mayroon akong mahalagang sasabihin sa inyo. Mrs Reyes: What is this news? Ano ho ‘yon? Dr Lua: You have been approved for treatment of your multidrug-resistant tuberculosis, or MDR-TB, in your lungs. The good news is that MDR-TB can be cured by taking drugs that we can provide here at no cost to you. Ikaw ay kailangang gamutin para sa multidrug-resistant tuberculosis, o MDR-TB sa iyong baga. At ang gamutan ay wala pong bayad. Tell me, what have you heard about the disease multidrug-resistant tuberculosis? Gusto kong malaman kung ano ang mga narinig mo na tungkol sa multidrug-resistant tuberculosis? Mrs Reyes: I have heard that it makes you very weak, and the drugs are very strong and make you sick as well. You cannot eat with your family. Most people die from it. Nalaman ko na ito ay lubhang nagpapahina ng katawan, ang mga gamot ay malakas at nakakapagpasama ng pakiramdam. Hindi pwede kumain kasama ang pamilya. Maraming tao ang namamatay dahil dito. Dr Lua: It can make people very weak, but it is curable, and most people are cured. Multidrug-resistant TB means that the germ is not killed by the medicines used to treat ordinary TB, so we have to use other medicines. They are casued by the same TB germ, but the TB germ that is drug-resistant is more difficult to treat then the ordinary TB germ. MDR TB can occasionally come from direct transmission from a person with this serious type of TB. The important thing is to take all your drugs regularly, for a number of months. You will not have to eat apart from your family although it is important to take some precautions at the beginning of treatment. Nagpapahina ito ng katawan, pero ito ay nagagamot, at karamihan ng mga nagkasakit ay gumaling. Kapag mayroong multi drug-resistant TB, ang mikrobyo ay hindi na napapatay ng mga gamot na binibigay para sa pangkaraniwang TB. Posible itong makuha sa taong mayroon ng ganitong klase ng TB. Mahalaga na araw-araw na pag-inom ng gamot sa itinakdang bilang na mga buwan. Hindi na kinakailangang kumain nang hiwalay sa iyong pamilya pero kinakailangang mag-ingat sa simula pa lang ng gamutan. 62 Inform Patients about MDR-TB MODULE D Mr Reyes: So what is the difference between MDR-TB and TB? E, Doc, ano ho ang pagkakaiba ng MDR-TB at TB? Dr Lua: That’s a very good question. The germ is the same, but MDR-TB is more difficult to treat and this means that treatment for MDR-TB is much longer usually 18-24 months, or more. MDR-TB is not curable with the medicines that we use to treat ordinary TB with, so we have to use other medicines. These different medicines are not as active as the medicines used for ordinary TB and in addition, can cause more side effects as you mentioned earlier. It is more difficult to treat, and if it is not treated correctly, would lead to more resistant germs. But MDR-TB patients can be cured with regular intake of medicines! As of now, there are no other options available if MDR-TB patients are not cured by this treatment regimen. XDR-TB is even more serious than MDR-TB and the failure rate is very high. Hence, spreading MDR-TB to others and getting XDR-TB should be avoided by religiously taking the drugs for MDR-TB. “Mabuti nai tanong mo ‘yan. Ang mikrobyo ay pareho lang, ngunit ang MDR-TB ay mas mahirap gamutin at ang gamutan ay aabot ng 18-24 months o higit pa. Ang MDR-TB ay hindi napapagaling ng mga gamot para sa pangkaraniwang TB. Kaya, iba ang mga gamot na kailangang gamitin. Ang mga gamot na ito ay hindi kasing-epektibo kung ikukumpara sa mga gamot para sa pangkaraniwan na TB at bukod pa dito, ang mga gamot na ito ay posibleng makapagsanhi ng mga di magandang pakiramdam sa katawan o side effect. Ang MDR-TB ay mas mahirap gamutin at kapag hindi ito ginamot nang wasto, maari itong mas lumala. Ngunit kung tuluy-tuloy ang pag-inom ng gamot, maaari itong gumaling! Sa ngayon, wala nang iba pang pamamaraan para magamot kung ang pasyenteng may MDRTB ay hindi gagaling sa mga gamot na ito. Ang tinatawag na XDR-TB ay mas higit na malubha kaysa sa MDR-TB at ang di paggaling ay napakataas. Sa makatuwid, ang pagkalat ng MDR-TB at ang pagkakaroon ng XDR-TB ay kinakailangang iwasan sa pamamagitan ng walang palya na pag-inom ng gamot. Mr Reyes: What about our family? Will they get it? Paano ang aming pamilya? Mahahawa din ba kami? Dr Lua: There are ways to prevent spreading MDR-TB. Since you have TB germs in your lungs, you should cover your mouth when coughing or sneezing. You should also open windows and doors in your home to allow fresh air to flow through. An electric fan that can blow the air to the outside will help. May mga pamamaraan upang maiwasan ang pagkalat ng MDR-TB. Dahil ikaw ay may mikrobyo ng TB sa iyong baga, kinakailangang takpan mo ang iyong bibig kapag ikaw ay uubo o babahin. Buksan ninyo ang inyong mga bintana at pintuan sa inyong bahay para makapasok ang sariwang hangin. Makakatulong kung may electric fan na nagpapalabas ng hangin. If you take regular treatment, you should not be infectious after 1-2 months. Then you must continue treatment so that you can be cured, and so that you do not become infectious again. The patient needs the support of the whole family to be cured. (looking at Mr. Reyes) Kung tuloy-tuloy ang pag-inom ng gamot, malaki ang posibilidad na hindi ka na makakahawa sa iba pagkatapos ng 1-2 buwan. Kinakailangan tapusin ang gamutan para kayo ay tuluyang gumaling at masiguro na hindi ka na makakahawa sa iba. Kinakailangan ng pasyente ang suporta ng buong pamilya para gumaling. (nakatingin kay Mr Reyes) Mr Reyes: I will talk to our household members about this. Kakausapin ko ang mga kasamahan namin sa bahay tungkol dito.. Inform Patients about MDR-TB 63 MODULE D Mrs Reyes: I have taken enough TB treatment before. I don’t want to have TB any more. How long does the treatment last? Matagal na akong ginamot para sa TB dati. Ayaw ko nang magkasakit ulit. Gaano katagal ang gamutan? Dr Lua: That is a good question. Just like ordinary TB, every patient receives at least 4 kinds of medicines and one of them will be an injection. The treatment will last approximately 18-24 months. ‘Maganda at natanong mo ‘yan. Katulad ng pangkaraniwang TB, lahat ng pasyente ay bibigyan ng hindi bababa sa 4 na klase ng gamot at kasama dito ang isang ineksyon. Ang gamutan ay tatagal ng 18-24 na buwan. Mrs Reyes: Wow, 18-24 months is a long time. I don’t know if I can afford to spend all that time on treatment. Naku, napakatagal naman ng 18-24 na buwan. Hindi ko alam kung kakayanin ko ang ganyan katagal na gamutan. Mr Reyes: Such a long treatment. Napakatagal pala. Dr Lua: Well, all medicines are free, so you don’t have to worry about that. But it is very important that you take your medicines every day to be cured. We will decide which medicines are appropriate and will tell you when the treatment will end. You will take medicines every day, except Sundays. A health care worker will always observe you as you take your medicines. Ang lahat ng gamot ay libre, kaya di mo na kailangang isipin ang mga ‘yan. Pero, napakahalaga na iinumin mo ang mga gamot araw-araw para masiguro ang iyong paggaling. Pag-uusapan namin kung aling gamot ang nararapat sa iyo at itatakda namin kung hanggang kailan ang iyong gamutan. Kinakailangang uminom ka ng gamot araw-araw, maliban sa Linggo. May isang health care worker na titingin sa iyo habang ikaw ay umiinom ng gamot. Mrs Reyes: I really don’t think I can come in to take the medicine every day. Can’t I take it at home? I promise this time I will finish all of the pills. Sa tingin ko talaga hindi ko kayang pumunta dito para uminom ng gamot araw-araw. Pwede bang sa bahay na ako iinom? Pinapangako kong iinumin ko na ang lahat ng mga gamot. Dr Lua: A trained health worker or a treatment partner must observe you swallow all the drugs. This will ensure that you take the correct drugs regularly for the required time. By seeing you regularly, the health worker or treatment partner will also note whether you are improving or have problems like adverse drug reactions. If you do not take all of the drugs, MDR-TB will not be cured and you will continue to spread MDR-TB to your family or to the community where you live. It is dangerous to stop or interrupt treatment, because then the disease may become incurable. With supervised treatment, the health worker or treatment partner will be able to monitor if a dose is missed and can quickly investigate the problem. In many countries all over the world supervised treatment is shown to have much higher chances of curing patients. These are rules for the benefit of the patient and since treatment for MDR-TB is an expensive and long process, every measure must be taken to ensure that the treatment is a success. Now why do you think it is important to come here for the drugs? May isang health worker o treatment partner na dumaan sa pagsasanay ang titingin sa iyo habang iniinom mo ang mga gamot. Sinisiguro nila na nainom mo ang mga tamang gamot sa nakatakdang panahon. Sa araw-araw na pagpunta mo dito, malalaman ng health worker o iyong treatment partner kung ikaw ay gumagaling o nagkaroon ng problema kagaya ng mga reaksyon sa gamot. Kung hindi mo iinumin ang lahat na mga gamot, ang MDR-TB ay hindi na magagamot at patuloy kang makakahawa sa ibang tao – iyong pamiya at komunidad mo. Lubhang mapanganib ang paghinto o paputol-putol na pag-inom ng gamot, dahil kung gayon, ang sakit ay maaaring hindi na magagamot. Sa tutok gamutan, nasusubaybayan ng health care worker o treatment partner mo kung may araw na hindi ka nakainom ng gamot at agad-agad malaman kung ano ang problema. Sa maraming bansa sa buong mundo, napatunayan na sa tutok gamutan mas marami ang mga pasyenteng gumagaling. Ito ay mga alituntunin para sa kapakanan ng mga pasyente. Dahil ang 64 Inform Patients about MDR-TB MODULE D gamutan para sa MDR-TB ay matagal at napakamahal, lahat ay dapat gawin upang masiguro na ang gamutan ay magiging matagumpay. Ngayon, sa palagay mo, bakit mahalaga ang araw-araw na pagpunta mo dito para uminom ng gamot? Mrs Reyes: This will ensure that I take the appropriate drugs everyday so I will get well. Nasisiguro nito na naiinom ko ang mga tamang gamot araw-araw at upang masiguro na ako ay gagaling. Mr Reyes: We want her to get well. Gusto naming gumaling siya. Dr Lua: To be cured, Mrs Reyes must take all of the drugs. It will be best if you do not travel during this time since we cannot give you drugs to take with you. If by chance you have to travel or move during the treatment, you must let me know so we can try to make arrangements. I know this is a lot of information. Do you have any questions? Para gumaling, kinakailangan mong sundin ang buong gamutan. Mas makakabuti kong hindi ka muna magbyahe habang ginagamot dahil hindi ka namin mabibigyan ng baon na gamot. Kung kinakailangan mong bumiyahe o lumipat habang ginagamot, kinakailangang sabihin mo sa akin para makapagplano tayo. Alam ko na maraming impormasyon na ang iyong narinig. Mayroon ka bang tanong? Mrs Reyes: After 18 months will I be cured? Pagkatapos ng 18 buwan, gagaling na ba ako? Dr Lua: The whole treatment will take a minimum of 18 months. Every month we will do a sputum test to see how you are doing and we will let you know. Do you have any more questions? Ang buong gamutan ay di bababa sa 18 buwan. Magsasagawa tayo ng eksaminasyon sa iyong plema buwan-buwan upang masuri and iyong kalagayan at ipapaalam naming sa iyo ang mga resulta. Mrs Reyes: The treatment will take long and I think it will not be easy. (She sighs...) Matagal pala ang gamutan at sa tingin ko hindi ito magiging madali. Dr Lua: I understand that it seems like a lot of trouble, but it is worth it to be cured. I will now go through the Contract. We have discussed most of the information written here. (Dr Lua hands a copy each of the Contract to Mr and Mrs Reyes). This Contract needs to be signed by the patient and his immediate family member and a Treatment Center staff. (Dr Lua points to the second page of the form where the patient and family member will sign) Signing this contract means you have been informed and that you agree with the statements in this contract. Naintindihan ko na parang mahihirapan kayo pero katumbas nito ang paggaling. Ngayon po titingnan po natin ang Kasunduan o Contract. Napag-usapan na natin ang karamihan sa nakasulat dito. (Bibigyan ni Dr Lua ng tig-iisang kopya ng “Kasunduan o Contract” sina Mr and Mrs Reyes.) Ang “Kasunduan” na ito ay kinakailangang pirmahan ng pasyente at malapit na miyembro ng pamilya at ng Treatment Center staff. (Ituturo ni Dr Lua ang pangalawang pahina ng “Kasunduan” kung saan pipirma ang pasyente at kapamilya.) Sa pagpirma ng “Kasunduan,” mangangahulugan ito na kayo ay nabigyan ng paliwanag at kayo ay sumasang-ayon sa mga nasulat dito. (See the Reference Booklet for the Kasunduan o Contract) (See Module C: Treat MDR-TB Patients, for the enrollment procedures.) Mr and Mrs Reyes: Salamat po Dr Lua. Inform Patients about MDR-TB 65 MODULE D Annex D: Text of MDR-TB Drug Flip Chart Drug Description H This is Isoniazid, one of the two most potent first-line drugs for TB but ineffective for MDR-TB. This is a yellow tablet containing 300mg of Isoniazid. Common side effects are well-tolerated such as abdominal pain, dizziness, nausea and vomiting. If you notice yellowing of your skin, consult your doctor right a way. R This is Rifampicin, one of the two most potent first-line drugs for TB but ineffective for MDR-TB. This is a red capsule containing 150, 300, 450 or 600mg of Rifampicin. This could also come in different preparation.Your body fluids such as urine, tears and sweat will have red coloration. This is normal. Common side effects are well-tolerated such as abdominal pain, dizziness, nausea and vomiting. This is usually experienced in the first few weeks of treatment. This may interact with oral contraceptives thus other methods are advised. If you notice yellowing of your skin, consult your doctor right a way. Z This is Pyrazinamide, one of the first-line drugs used for TB but still used in MDR TB. This is a white or green, round tablet containing 400mg or 500mg of pyrazinamide. Common side effects are well-tolerated such as nausea and vomiting, abdominal pains, body aches, joint pains, and having big pimples on the face and the body. These side effects are usually experienced only in the first few weeks of treatment. If symptoms persist, consult your doctor immediately. It is recommended to inform your doctor of any side effects you will experience. Avoid eating food that could induce arthitis or joint pains such as mongo beans. If you notice yellowing of your skin, consult your doctor right a way. E This is Ethambutol, one of the first-line drugs for TB but still used in MDR TB. This is a white tablet containing 400mg of Ethambutol. Common side effects are usually well-tolerated such as abdominal pain, nausea, vomiting and headache.These side effects are sometimes experienced in the first few weeks of treatment. If you experience blurring of vision and signs of color blindness especially to color red and green, consult your doctor right a way. S This is Streptomycin, an injection given for the treatment of MDRTB. Each vial contains 750mg or 1 gram powder of Streptomycin to be dissolved in water for injection. 1 vial is given daily to patients with an average weight. This is injected in the biceps or buttocks area for six months or more, depending on the results of your monthly sputum. Rotation of injection sites is advised to avoid local discomfort. It is also advised to place warm compress in the area. If there is bleeding after injection, you may apply pressure on the injection site. Inform and consult your doctor immediately if you experience the following symptoms: swelling, pain and redness on the injection area, ringing in the ears, skin rash, problem in urination, and muscle weakness. Km This is Kanamycin, an injection given for the treatment of MDRTB. Each vial contains 1 gram powder of Kanamycin to be dissolved in water for injection. 1 vial is given daily to patients with an average weight. This is injected in the biceps or buttocks area for six months or more, depending on the results of your monthly sputum. Rotation of injection sites is advised to avoid local discomfort. It is also advised to place warm compress in the area. If there is bleeding after injection, you may apply pressure on the injection site. Inform and consult your doctor immediately if you experience the following symptoms: swelling, pain and redness on the injection area, ringing in the ears, skin rash, problem in urination, and muscle weakness. Am This is Amikacin, an injection given for the treatment of MDRTB. Each vial contains 500 mg/2mL solution of Amikacin. 2 vials are given daily to patients with an average weight. This is injected in the biceps or buttocks area for six months or more, depending on the results of your monthly sputum. Rotation of injection sites is advised to avoid local discomfort. It is also advised to place warm compress in the area. If there is bleeding after injection, you may apply pressure on the injection site. Inform and consult your doctor immediately if you experience the following symptoms: swelling, pain and redness on the injection area, ringing in the ears, skin rash, problem in urination, and muscle weakness. Cm This is Capreomycin, an injection given for the treatment of MDRTB. Each vial contains 1 gram powder of Capreomycin to be dissolved in water for injection. 1 vial is given daily to patients with an average weight. This is injected in the biceps or buttocks area for six months or more, depending on the results of your monthly sputum. Rotation of injection sites is advised to avoid local discomfort. It is also advised to place warm compress in the area. If there is bleeding after injection, you may apply pressure on the injection site. Inform and consult your doctor immediately if you experience the following symptoms: swelling, pain and redness on the injection area, ringing in the ears, skin rash, problem in urination, and muscle weakness. 66 Inform Patients about MDR-TB MODULE D Drug Description Ofx This is Ofloxacin, one of the most effective drugs for MDRTB. This is a white, oblong tablet containing 200mg or 400mg of Ofloxacin. 4 tablets of 200mg or 2 tablets of 400mg are usually given to patients. Common side effects include difficulty in sleeping, abdominal pain, decrease in appetite, headache and dizziness. If symptoms persist, consult your doctor. Avoid taking with drugs or food containing milk, Aluminum, Magnesium or Zinc within 2-3 hours. Take a lot of water and limit exposure to sunlight by using umbrella, sunglasses and wearing long-sleeves. This is Moxifloxacin, one of the most effective drugs for MDRTB. Mfx This is an old-rose, oblong tablet containing 400mg of Moxifloxacin. One tablet is usually taken by patients daily. Common side effects include difficulty in sleeping, abdominal pain, decrease in appetite, headache and dizziness. If symptoms persist, consult your doctor. Avoid taking with drugs or food containing milk, Aluminum, Magnesium or Zinc within 2-3 hours. Take a lot of water and limit exposure to sunlight by using umbrella, sunglasses and wearing long-sleeves. Pto This is Prothionamide, one of the second-line drugs used for MDRTB. This is an orange round tablet and contains 250mg of Prothionamide. 2-3 tablets are usually given to patients. Common side effects include dizziness, vomiting, abdominal pain, diarrhea, sensitivity to light and hypersalivation. This drug will give a metallic taste to the mouth. Eating candy may help decrease this unpleasant taste. You may experience light sensitivity. Limit exposure to sunlight. If this could not be avoided, using sunglasses and umbrella may help. Because of possible dizziness, it is advised to avoid driving vehicle or operating machinery that needs alertness and attention. Cs This is Cycloserine, one of the second-line drugs used for MDRTB. This is a red and gray capsule containing 250mg of Cycloserine. Two to three capsules are usually given to patients. Inform your doctor immediately if you will experience the following symptoms: dizziness, headache, chills, decrease in mental and speech ability, numbness of feet and hands, nervousness, confusion, hearing voices others cannot hear,difficulty in sleeping and depression. It is recommended to inform the doctor of whatever side effects you will experience. You need to take Vitamin B6 together with cycloserine to lessen these side effects. You are also advised to eat nutritious food and to sleep well. Because of possible dizziness, it is advised to avoid driving vehicle or operating machinery that needs alertness and attention. PAS This is Para-amino salicylic acid, one of the second-line drugs used for MDRTB. Paser is its brand and requires refrigeration during storage. These are small off-white or tan granules inside a sachet. Two sachets are usually taken by patients daily. It is important that the granules of PAS are mixed with an acidic juice such as orange, pineapple and mango juice. To increase absorption, do not mix with water, buko juice, softdrinks or iced tea. The granules will not be dissolved with the juice. You may use a straw to drink the mixture so that the granules will not lodge in the throat and to avoid biting the granules. All the granules must be taken. Common side effects include vomiting, abdominal pain and diarrhea.If symptoms persist, consult your doctor immediately. If you have signs of dehydration, you may take oral rehydration solutions or your doctor may administer fluids intravenously. It is normal to see empty granules with your feces. Clr This is Clarithromycin, one of the weak drugs for MDRTB. This is a yellow and oblong tablet containing 500mg of Clarithromycin. Common side effects are well-tolerated such as abdominal pain, nausea and vomiting, and loss of appetite. Inform Patients about MDR-TB 67 MANAGEMENT OF DRUG-RESISTANT TUBERCULOSIS TRAINING FOR HEALTH FACILITY STAFF IN THE PHILIPPINES This course is designed to equip health workers with the knowledge, skills and attitudes (KSA) to detect and treat MDR-TB cases, manage first- and second-line drugs, inform patients about MDR-TB, and monitor the success of MDR-TB treatment at both Treatment Centers and Treatment Sites using competency-based training modules. These health workers may include physicians, nurses, midwives, and other health care professionals from the public and private sectors. This course uses a variety of methods and instructions, including reading, written exercises, discussions, role plays, demonstrations, and observations in a real health facility. Practice, whether in written exercises or role plays, is considered a critical element of instruction. The complete training course includes the following modules (booklets containing units of instruction). Depending on the structure of your course, you may have been given some or all of these modules: A Introduction (includes a glossary with definitions of terms that may be unfamiliar) B Detect Cases of MDR-TB C Treat MDR-TB Patients D Inform Patients about MDR-TB E Ensure Continuation of MDR-TBTreatment F Manage Drugs and Supplies for MDR-TB G Monitor MDR-TB Case Detection andTreatment H Field Exercise – Observe MDR-TB Management REF Reference Booklet on the Management of MDR-TB The Reference Booklet contains important forms, worksheets, and summaries of procedures taught in the course. It also contains instructions for filling out forms. You can use this booklet as an on-the-job resource. The course is designed for small groups of participants who are led and assisted by "facilitators" as they work through the course modules. The facilitators are not lecturers as in a traditional classroom. Their role is to answer questions, provide individual feedback on exercises, lead discussions, structure role plays, etc. For the most part, participants work at their own pace through the modules, although in some activities, such as role plays and discussions, the small group works together. ISSN 2012-2675 Department of Health Government of Philippines Tropical Disease Foundation, Inc. Makati, Metro Manila, Philippines World Health Organization Office of the Representative in the Philippines 9 772012 267009 PRINTED IN THE PHILIPPINES
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