INTERNATIONAL TRENDS IN IMMUNITY ISSN 2326-3121 (Print) ISSN 2326-313X (Online) VOL.2 NO.1 http://www.researchpub.org/journal/iti/iti.html JANUARY 2014 E-learning for Continuing Medical Education: an Instrument to Expand Knowledge and Awareness on Primary Immune Deficiencies C. Militoa, F. Pulvirenti a, S. Tabolli b, I. Quinti a Abstract - Continuing professional education is vital to reduce underdiagnosis and misdiagnosis of patients affected by Primary Immune Deficiencies. According to the mission of The Jeffrey Modell Centres Network aimed to provide the infrastructure for diagnosis and appropriate treatment for PID, we organized an E-learning course on PID consisting in a six tutorial modules, self-directed. Advices for registration have been sent by e-mail for a period of one year to all the 17.000 Italian General Practitioners and to the 3.500 Paediatric Family Practitioners. Professionals who correctly completed the questionnaire received credits from the Italian Ministry of Health. Learner satisfaction was assessed by a set of 4 questions. A total of 2.226 users had registered and 1.736 had completed the course. Participants were General Practitioners (60%), Paediatric Practitioners (18%), and Specialists (22%). Most of physicians had diagnosed or referred a patient with PID in the last 5 years. 69% passed the test, 9% failed and 22% did not complete it. An older age was identified among physicians who failed the test. Better scores (80% of correct answers) were found for themes on antibody deficiencies diagnosis, immunoglobulin therapy, the 10 Warning Signs. The worse scores (<50% of correct answers) were found for themes on the use of vaccines, PID diagnosis other than antibody deficiencies. A continuous education of General Practitioners and healthcare professionals on PID appears to be necessary in order to ensure prompt recognition and referral to specialists with expertise in the care of PID patients. I. INTRODUCTION Delayed primary immunodeficiency disorder (PID) diagnosis leads to increased morbidity and mortality [1-5]. PID is more common than had been previously estimated in that a large population of patients is still undiagnosed [6]. Principal factors leading to misdiagnosis and ensuing complications can be the lack of knowledge and the proper evaluation of physicians working as General Practitioners (GP), such as family doctors and family paediatricians. GP are usually the first to identify "unusual" patients that might have these rare diseases. Prompt identification of PID is important for prognosis, but this may not be an easy task. Subsequent referral for specialist assessment is mandatory to lead to an appropriate therapy to prevent or limit structural organ and tissue damage [7-8]. As a consequence, continuing professional development and education is vital to the provision of better health services and outcomes. It has already been demonstrated the potential of the Internet as a medium for teaching basic and applied immunology, to illustrate complex concepts in new ways for audiences that are diverse and often geographically dispersed [9]. E-learning could be used as a tool for educational and for awareness evaluation. The aim of this study was to expand the PID awareness and knowledge by the use of a Web-based education course targeted to provide information and instruments for PID identification and diagnostic criteria leading to correct diagnosis and treatment. According to the mission of The Jeffrey Modell Centres Network aimed to provide the infrastructure for referral, diagnosis and appropriate treatment for PID [10] we prepared an e-learning course on PID. Web-based educational resources have been demonstrated to enhance practitioners' ongoing learning and clinical competence [11]. Here, we demonstrated that a more comprehensive postgraduate medical education about PID appears to be necessary for all physicians and in particular for those older than 50 years. Keywords: awareness, e-learning, general practitioners, misdiagnosis, Primary Immune Deficiencies Received Oct. 4th, 2013. Accepted after revision Oct 29th, 2013 a JMF Italian Diagnostic and Research Centre and Department of Molecular Medicine, Sapienza University of Rome, and b Health Services Research Unit, IDI IRCCS, Rome, Italy Corresponding Author: Isabella Quinti. Tel.: +390649972007; Fax: +390649972007. [email protected]. Viale dell’Università 37, 00186 Rome, Italy 47 INTERNATIONAL TRENDS IN IMMUNITY ISSN 2326-3121 (Print) ISSN 2326-313X (Online) VOL.2 NO.1 http://www.researchpub.org/journal/iti/iti.html JANUARY 2014 relevance of topics (85% very relevant, 12% relevant, 3% sufficiently relevant), and for the utility of the update (62% very high, 30% high, 8% sufficient). The time spent for the course was the same indicated by us (20 hours) for 41%, longer for 30%, shorter for 41% and much longer for 15% of the participants (Fig.3). Results of the knowledge validation II. METHODS Web-based resources for general and paediatric family practitioner’s education were provided by our Jeffrey Modell Centre for Primary Immunodeficiencies. The course consisted in a six tutorial modules, self-directed. Healthcare professionals were invited to undertake an E-learning course by advices for registration repeatedly sent by e-mail for a period of one year to all the 17.000 Italian GP and to the 3.500 Paediatric Family Practitioners. It has to be noted here that, differently from most of the world Countries, the National Health Service (NHS) provides a Paediatric GP for all Italian children up to the age of 14 years. Time spent for the e-learning course was calculated in a 20 hours stand-alone Web-based education course. Knowledge validation was done by a set of 40 questions with pre-defined answers. The E-learning modules were developed, comprising also key messages taken from the 10 Warning Signs developed by the Jeffrey Modell Foundation (Supplementary Fig. 1), and 2 case histories relating to the care of PID patients designed to mirror real- life clinical scenarios. The course was organized in collaboration to the Italian Ministry of Health and it was free of charge. Professionals who correctly completed the questionnaire received 12 credits from the Ministry. Learner satisfaction was also assessed by a set of 4 questions. Results of the sets of 40 questions filled at the end of the course revealed that those responders who correctly completed the test were more likely to be younger. 69% of participants passed the test and got credits from the Ministry of Health, 9% failed and 22% did not completed the test. There were no differences among the different settings of work, in that the same percentage of physicians who passed and failed were working as NHS employees, General and Paediatric Practitioners, and physicians working in private practice. Major differences were found in relation to the age of participants. An older age (>50 years) was identified among physicians who failed the test. We separately analysed the validation test results obtained in four major cities: Rome, Naples, Bari and Palermo. All cities showed the same trend observed in the overall Italian analysis: physicians who failed were the oldest with the exception of Palermo where we observed no differences related to the age. Knowledge validation contents The e-learning tutorial was organized in six modules: 1) general principles of the immune system; 2) primary immune deficiencies; 3) 10 Warning Signs for PID; 4) treatments; 5) case report n.1 (Common Variable Immunodeficiency); case report n.2 (X-linked Agammaglobulinemia). The set of 40 questions was organized in order to verify knowledge level acquired through the course: 10 questions were related to the 10 Warning Signs; 10 questions to the mistakes inserted into the clinical description of the 2 case reports; 10 questions were related to immunoglobulin replacement therapy and adverse events; 10 questions were related to PID diagnostic criteria. In table 1 we reported the questions with the highest rate of correct answers (upper part) and the lowest rate of correct answers (lower part). Better scores (80%) were found when examining answers related to questions relative to antibody deficiencies diagnosis, immunoglobulin therapy, immunoglobulin dosing for PID, 10 Warning Signs. The worse scores (<50%) were found for the questions concerning the use of vaccines, immunoglobulin subcutaneous adverse reactions, diagnosis of PID other than antibody deficiencies. III. RESULTS Characteristics of participants After the modules have been available on line for one year, a total of 2.226 users had registered and a total of 1.736 had completed them, a figure documenting that family doctors working as GP or Paediatric Practitioners members of NHS or working in private medicine showed awareness and interest for PID. Physician participants were General Practitioners (60%), Paediatric Practitioners (18%), and Specialists in different disciplines (22%) (Fig.1). Regional distribution covered the entire Country with a similar participation rate in North, Centre and South of Italy. Overall, most of physicians had diagnosed, treated, or referred a patient with PID in the last 5 years: 45% had 1-2 patients, 14% 3-4 patients, 28% more than 4 patients and 19% had no PID patients attending their clinics (Fig.2). For comparison, the number of patients with other immunological disorders attending their clinic is shown in the Figure. When a possible PID case presented, 65% of physicians referred the PID patient to a local regional reference centre for PID, 11% to a haematologist, 17% to an immunologist, and 7% to other specialists. IV. DISCUSSION Rare diseases are a serious public health problem and are a threat to the health of EU citizens [12]. Important role in the area of rare diseases have the medical specialists who diagnose and monitor the course of the disease of each patient. However, and even more important it is the GP’s awareness and knowledge about rare diseases as a strong factor for the timely and accurate diagnosis and adequate treatment. Efficient early Quality feedback In the satisfaction questionnaire, the E-learning course was judged in a positive way by participants: 80% declared a very high quality and 15% a good quality. Only 4% declared a sufficient quality. The same satisfaction was declared for the 48 INTERNATIONAL TRENDS IN IMMUNITY ISSN 2326-3121 (Print) ISSN 2326-313X (Online) VOL.2 NO.1 http://www.researchpub.org/journal/iti/iti.html identification of PID is important for prognosis, but is not an easy task for non-immunologists. Some studies addressed the issue of medical awareness on PID using questionnaires distributed among doctors working in different fields [13-14]. As a part of The Jeffrey Modell Centers Network that includes 518 Expert Physicians at 196 Academic Teaching Hospitals in 191 cities, 68 countries and 6 continents and still expanding every day we chose to verify the usefulness of a different approach by the use of a PID related E-learning course. Online systems of training for healthcare workers have previously been established for knowledge transfer as equivalent to other forms of teaching [15-16]. It has the advantage that users can determine the time, duration, and place of learning. Because PIDs may present at all ages, the E-learning course was targeted at both general and paediatric practitioners. The responses of registered doctors indicate a good level of knowledge acquired through the E-learning course. However, a low level of knowledge was identified in older physicians working in South of Italy. This means that older practitioners from the NHS could not provide sufficient in quality and timeliness specific information to their patients with PID. The majority of medical practitioners provided correct answers to the final validation questionnaire and got credits from our Ministry of Health. Even with these fairly positive results, we were surprised by the apparently good score (>80%) of correct answers relative to the themes on recommendations for complementary/alternative medicine. The other way to read this figure is that >10% of participants still believed that there might be alternative therapies to immunoglobulin administration in patients with primary defects of humoral immunity, as already demonstrated by a recent paper describing results of a survey by the Primary Immunodeficiency Committee of the American Academy of Allergy Asthma and Immunology [17]. Differences between GP were identified. The main difference was not related to the different setting where clinical practices are performed but on the age of participants. Thus, the need for expanded educational efforts targeting older medical doctors should be defined. Moreover, whether these efforts might result in a long-term change of practice should also be assessed. Results of this E-learning course were received by the Italian Ministry of Health. They underlined the need of a continuous education of healthcare professionals, required to ensure prompt recognition and referral to specialists with expertise in the care of PID patients. The results were also sent to The Ministry of University and Education who recently inserted a course on rare diseases during the medical undergraduate training program. As it was already been demonstrated by critical care educators and practitioners [18-20], E-learning might be actively integrated into training programs for continuing medical education. The positive attitude to PID learning demonstrated by the high number of physicians registered could be biased in favour of healthcare professionals with a pre-existing interest in PID, and may not be representative of all GP. Bearing in mind this limitation, the feedback was supportive, and many of the comments consisted of positive comments such as “very relevant” or “relevant”. Significant gaps remain in ensuring PID in primary care. This project has demonstrated that JANUARY 2014 E-learning trough e-mail invitations offering GPs relevant teaching modules is one method of reinforcing and highlighting clinical guidelines in an attempt to effect change in primary care practice on PID. Web resources for general and paediatric practicioner’s education in a variety of E-learning formats, such as tutorials, self-directed learning modules, interactive case studies, should be considered useful instruments for PID awareness. Core components of the Jeffrey Modell Foundation programme such as the 10 Warning Signs have been delivered successfully to thousands of people across the word. There is a great potential for further exploration on web based systems to deliver and support medical education on PID. REFERENCES [1] Srinivasa BT, Alizadehfar R, Desrosiers M, Shuster J, Pai NP, Tsoukas CM. Adult primary immune deficiency: what are we missing? Am J Med. 2012;125:779-86. [2] Gathmann B, Binder N, Ehl S, Kindle G; ESID Registry Working Party The European internet-based patient and research database for primary immunodeficiencies: update 2011. Clin Exp Immunol. 2012;167:479-91. [3] Aghamohammadi A, Bahrami A, Mamishi S, Mohammadi B, Abolhassani H, Parvaneh N, Rezaei N Impact of delayed diagnosis in children with primary antibody deficiencies. J Microbiol Immunol Infect. 2011;44:229-34 [4] Wood P; UK Primary Immunodeficiency Network. Primary antibody deficiencies: recognition, clinical diagnosis and referral of patients. Clin Med. 2009;9:595-9. Review. [5] Wood P, Stanworth S, Burton J, Jones A, Peckham DG, Green T, Hyde C, Chapel H; UK Primary Immunodeficiency Network. Recognition, clinical diagnosis and management of patients with primary antibody deficiencies: a systematic review. Clin Exp Immunol. 2007;149:410-23. [6] Modell V, Gee B, Lewis DB, Orange JS, Roifman CM, Routes JM, Sorensen RU, Notarangelo LD, Modell F. Global study of primary immunodeficiency diseases (PI)--diagnosis, treatment, and economic impact: an updated report from the Jeffrey Modell Foundation. Immunol Res. 2011;51:61-70). [7] Quinti I, Soresina A, Spadaro G, Martino S, Donnanno S, Agostini C, Claudio P, Franco D, Maria Pesce A, Borghese F, Guerra A, Rondelli R, Plebani A; Italian Primary Immunodeficiency Network Long-term follow-up and outcome of a large cohort of patients with common variable immunodeficiency. 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ACKNOWLEDGMENTS ACKNOWLEDGMENTS We are enormously grateful to Vicki and Fred Modell who greatly support our work through the Jeffrey Modell Foundation. 50 JANUARY 2014 INTERNATIONAL TRENDS IN IMMUNITY ISSN 2326-3121 (Print) ISSN 2326-313X (Online) VOL.2 NO.1 http://www.researchpub.org/journal/iti/iti.html Table 1. Question correct answers What routine examination may reveal a condition of hypogammaglobulinemia? 97% What tests are recommended to perform to exclude hypogammaglobulinemias secondary to lymphoproliferative disorders? 89% Which of these symptoms can be considered an adverse reaction to treatment with immunoglobulins? 87% Do you think there may be alternative therapies to immunoglobulin administration in patients with primary defects of humoral immunity? 84% In an adult of thirty years with recurrent skin abscesses is possible to assume a primary immunodeficiency? 82% In a child with growth retardation and oral candidiasis is possible to assume a primary immunodeficiency? 80% What is the dose of immunoglobulin to be administered as replacement therapy? 80% When to get a vaccine response, you need to convert a T-independent response in a Tdependent response? 30% What is the immune defect in patients with SCID? 39% Have been described reports of HBV transmission in patients through immunoglobulins? 44% Immunoglobulin for subcutaneous use causes local reaction at the site of administration? 46% What is the dose of immunoglobulin to be administered as immunomodulatory therapy? 50% What is the suspected diagnosis in a patient with the following dosage of serum immunoglobulins: IgG 320 mg/dl, IgA <4 mg/dl, IgM <8 mg/dl? 53% What are the prevalent infections in patients with antibody deficiencies? 55% JANUARY 2014 Figure caption list Fig.1. Total number of participants divided according to their different clinical practices. Fig.2. PID patient referral (upper part). Number of PID patients and number of patients with other immunological disorders diagnosed, treated, or referred in the last 5 years by participants (lower part): 45% had 1-2 patients, 14% 3-4 patients, 28% more than 4 patients and 13% had no PID patients attending their clinics. 63% had less than 10 patients, 15% had 10-50 patients, 7% had 50-100 patients and 15% had more than 100 patients affected by other immunological diseases. 51 INTERNATIONAL TRENDS IN IMMUNITY ISSN 2326-3121 (Print) ISSN 2326-313X (Online) VOL.2 NO.1 http://www.researchpub.org/journal/iti/iti.html Fig.3. Quality feedback. Educational quality, utility of the update, relevance of topics, time spent for fruition declared by participants. JANUARY 2014 Supplementary Fig. 1. The 10 Warning Signs developed by the Jeffrey Modell Foundation. 52
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