ISLET CELL TRANSPLANT PROGRAM INTAKE QUESTIONNAIRE Last Name ________________________First Name______________ Middle Initial _____ Date of Birth ___ Social Security Number _________________________ DEMOGRAPHIC INFORMATION Address__________________________________________________________________ City __________________________________State___________Zip_________________ E-mail address _____________________________________________________________ Home Phone Work Phone Cell Phone________________ Best # to be reached at: ______________________________________________________ INSURANCE INFORMATION Insurance Company Name Group Number Name of Insured _____________________ Plan Number _______________________ PHYSICIAN INFORMATION Name of physician who helps you manage your diabetes ___________________________ Specialty_________________________________________________________________ Telephone ________________________________Fax_____________________________ Address __________________________________________________________________ __Zip _______________ City ____________________State Name of primary care physician _______________________________________________ Telephone Fax _____________________________ Address __________________________________________________________________ State Zip _________________ City Name of other physician Specialty_____________ Telephone Fax ______________________________ Address __________________________________________________________________ City State Zip __________________ Name of other physician Specialty____________ Telephone Fax ______________________________ Address __________________________________________________________________ City State Zip __________________ PERSONAL INFORMATION 1. Who is your significant other? Name____________________________________Relationship___________________ YES NO 2. Do you have a Power of Attorney for Healthcare? If yes, who is it? Name_______________________Relationship __________________ If no, whom would you designate? __________________________________________ 3. Are you pregnant? YES NO NA 4. Do you plan on becoming pregnant? YES NO NA YES NO NA 5. Do you currently use a form of birth control? If yes, what form? _________________________________________________________ 6. How many pregnancies have you had? ________________________________________ 7. Number of children and ages. _______________________________________________ 8. Do you smoke cigarettes? YES NO If yes, how many cigarettes per day? ____________________________________________ 9. Do you consume alcohol? YES NO If yes, how many drinks per week? ____________________________________________ 10. Do you take any medication not prescribed by your physician? YES NO If yes, please give name, dosage, and what you are taking the medication for. _________________________________________________________________________ 11. Do you take any illegal drugs or substances? YES NO If yes, name and frequency of use ______________________________________________ 12. Have you ever received psychiatric treatment or been diagnosed with a psychiatric or mental illness? YES NO 13. What is your current height (inches) _____________weight (pounds)? ______________ ADDITIONAL INFORMATION The following information is not be used to determine participation in the study. 1. Gender: Male Female 2. Citizenship: U.S. Citizen Resident Alien Non-Resident Alien If non-resident alien, specify country of citizenship _______________________________ 3. Ethnicity: Hispanic Non-Hispanic 4. Race: White Black/African American American Indian/Alaskan Native Asian Arab/Middle Eastern American Hawaiian/Pacific Islander Other 5. Highest Educational Level: None Grade School (0-8) Attended College/Trade School Associate Degree Masters Degree Doctoral Degree High School (9-12) Bachelors Degree Not Working due to Disability Not Working by Choice 6. Employment Status: Unable to Find Work Not Working-Other Working Part Time due to Disability Working Part Time by Choice Working Part Time-Other Not Working by Choice Retired 7. What type of work do you do? ________________________________________________ DIABETES HISTORY 1. Do you have Type 1 diabetes? YES NO 2. Have you had diabetes for more than 5 years? YES NO 3. What was the month and year you were diagnosed with diabetes? ____________________ 4. How old were you when you were diagnosed? ___________________________________ 5. Have you been on insulin since you were first diagnosed with diabetes? 6. Have you been on insulin for more than 5 years? YES YES NO NO 7. Are you under the care of an endocrinologist, diabetologist, or diabetes specialist? YES NO If no, who helps you manage your diabetes? ________________________________________ 8. In the past 12 months, how many times did you see your diabetes doctor? ______________ 9. On average, how often do you check your blood sugars a day? ________________________ 10. Do you have difficulty controlling your blood sugars despite 3 or more insulin injections YES NO per day or using an insulin pump? 11. Do you experience low blood sugars that you are unaware of and require the assistance of another person? YES NO 12. Have you ever required ambulance assistance or had to visit a hospital because of low blood sugar? YES NO If yes, in the past 12 months, please indicate the approximate dates, what you were doing at the time, and what treatment you received. _________________________________________ ____________________________________________________________________________ 13. Do you own a glucagon injection kit to treat low blood sugar? YES NO 14. In the past 12 months, have you used a glucagon injection to treat low blood sugar? YES NO If yes, please list the approximate date(s). __________________________________________ 15. Please indicate which of the following symptoms you experience when your blood sugar is low: Sweating Shaking Heart Palpitations Problems with vision (impaired or double visions, eyes won’t focus) Change in behavior (unable to sleep, irritable, feeling stressed-out, nervous, wanting to sit down and do nothing) Confusion Seizure Other ( light-headed, dizzy, weakness, tiredness, sleepy, difficulty walking or speaking, slow responses, delayed motor skills, loss of balance) Other symptoms (please specify) _________________________________________________ None 16. In general please rank on a scale of 1 to 5 about how stable you feel your diabetes is: 1 (very stable) 2 (stable) 3 (somewhat stable) 4 (unstable) 5 (very unstable) DIABETES SURVEYS CLARKE HYPOGLYCEMIC INDEX 1) Check the category that best describes you: (check only one) I always have symptoms when my blood sugar is low I sometimes have symptoms when my blood sugar is low I no longer have symptoms when my blood sugar is low 2) Have you lost some of the symptoms that used to occur when your blood sugar was low? yes no 3) In the past 6 months how often have you had moderate hypoglycemia episodes? (Episodes where you might feel confused, disoriented, or lethargic and were unable to treat yourself) never a month once or twice every other month once a month more than once 4) In the past year how often have you had severe hypoglycemia episodes? (Episodes where you were unconscious or had a seizure and needed glucagon or intravenous glucose) never 1 time 2 times 3 times 5 times 6 times 7 times 8 times 9 times 10 times 11 times 12 or more times 5) How often in the last month have you had readings <70 mg/dL with symptoms? never 1 to 3 times 1 time/week 2 to 3 times/week 4 to 5 times/week almost daily 6) How often in the last month have you had readings <70mg/dL without symptoms? never 1 to 3 times 1 time/week 2 to 3 times/week 4 to 5 times/week almost daily 7) How low does your blood sugar need to go before you feel symptoms? 60-69 mg/dL 50-59 mg/dL 40-49 mg/dL <40 mg/dL 8) To what extent can you tell by your symptoms that your blood sugar is low? never rarely sometimes often always DIABETES DISTRESS SCALE Living with diabetes can be sometimes be tough. There may be problems and hassles concerning diabetes and they can vary greatly in severity. Problems may range from minor hassles to major life difficulties. Listed below are 17 potential problem areas which people with diabetes may experience. Consider the degree to which each of the 17 items may have distressed or bothered you DURING THE PAST MONTH and check the appropriate box. Please note that we are asking you to indicate the degree to which each item may be bothering you in your life, NOT whether the item is merely true for you. If you feel that a particular item is not a bother or a problem, you would check #1. If it is very bothersome to you, you would check #6. 1. Feeling that diabetes is taking up too much of my mental and physical energy every day. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 2. Feeling that my doctor doesn’t know enough about diabetes and diabetes care. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 3. Feeling angry, scared, and/or depressed when I think about living with diabetes. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 4. Feeling that my doctor doesn’t give me clear enough directions on how to manage my diabetes. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 5. Feeling that I am not testing my blood sugars frequently enough. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 6. Feeling that I am often failing with my diabetes regimen. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 7. Feeling that friends or family are not supportive enough of my self-care efforts (e.g., planning activities that conflict with my schedule, encouraging me to eat the “wrong” foods). 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 3-a moderate problem 6-a very serious problem 4-a somewhat 8. Feeling that diabetes controls my life. 1-not a problem serious problem 2-a slight problem 5-a serious problem 9. Feeling that my doctor doesn’t take my concerns seriously enough. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 10. Not feeling confident in my day-to-day ability to manage diabetes. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 11. Feeling that I will end up with serious long-term complications, no matter what I do. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 12. Feeling that I am not sticking closely enough to a good meal plan. 1-not a problem 2-a slight problem 3-a moderate problem 4-a somewhat serious problem 5-a serious problem 6-a very serious problem 13. Feeling that friends or family don’t appreciate how difficult living with diabetes can be. 1-not a problem 2-a slight problem 3-a moderate problem 4-a somewhat serious problem 5-a serious problem 6-a very serious problem 14. Feeling overwhelmed by the demands of living with diabetes. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 15. Feeling that I don’t have a doctor who I can see regularly about my diabetes. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 16. Not feeling motivated to keep up my diabetes self-management. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat 17. Feeling that friends or family don’t give me the emotional support that I would like. 1-not a problem serious problem 2-a slight problem 5-a serious problem 3-a moderate problem 6-a very serious problem 4-a somewhat HYPOGLYCEMIA FEAR SURVEY Below is a list of things people with diabetes sometimes do in order to avoid low blood sugar and its consequences. Choose the answer that best describes what you have done during the last 6 months in your daily routine to avoid low blood sugar and its consequences. To avoid low blood sugar and how it affects me, I: 1) Ate large snacks Inever I rarely I sometimes Ioften I always 2) Tried to keep my blood sugar above 150 Inever I rarely I sometimes Ioften I always 3) Reduced my insulin when my blood sugar was low Inever I rarely I sometimes Ioften I always 4) Measured my blood sugar six or more times a day Inever I rarely I sometimes Ioften I always 5) Made sure I had someone with me when I go out Inever I rarely I sometimes Ioften I always 6) Limited my out of town travel Inever I rarely I sometimes Ioften I always 7) Limited my driving (car, truck, bike) Inever I rarely I sometimes Ioften I always 8) Avoided visiting friends Inever I rarely I sometimes Ioften I always 9) Stayed at home more than I liked Inever I rarely I sometimes Ioften I always 10) Limited my exercise/physical activity Inever I rarely I sometimes Ioften I always 11) Made sure other people were around Inever I rarely I sometimes Ioften 12) Avoided sex Inever I rarely I sometimes Ioften I always I always 13) Kept my blood sugar higher than usual in social situations Inever I rarely I sometimes Ioften I always 14) Kept my blood sugar higher than usual when doing important tasks Inever I rarely I sometimes Ioften I always 15) Had people check on me several times during the day and night Inever I rarely I sometimes Ioften I always Below is a list of concerns people with diabetes sometimes have about low blood sugar. Please read each item carefully (do not skip any). Choose the answer that best describes how often in the last 6 months you worried about each item because of low blood sugar. 16) Not recognizing/realizing I was having low blood sugar Inever I rarely I sometimes Ioften I always 17) Not having food, fruit, or juice available Inever I rarely I sometimes Ioften I always 18) Passing out in public Inever I rarely I sometimes I always Ioften 19) Embarrassing myself or my friends in a social situation Inever I rarely I sometimes Ioften I always 20) Having a hypoglycemic episode while alone Inever I rarely I sometimes Ioften I always 21) Appearing stupid or drunk Inever I rarely I sometimes Ioften I always 22) Losing control Inever I rarely Ioften I always I sometimes 23) No one being around to help me during a hypoglycemic episode Inever I rarely I sometimes Ioften I always 24) Having a hypoglycemic episode while driving Inever I rarely Isometimes Ioften I always 25) Making a mistake or having an accident Inever I rarely I sometimes Ioften I always 26) Getting a bad evaluation or being criticized Inever I rarely I sometimes Ioften I always 27) Difficulty thinking clearly when responsible for others Inever I rarely I sometimes Ioften I always 28) Feeling lightheaded or dizzy Inever I rarely I sometimes Ioften I always 29) Accidentally injuring myself or others Inever I rarely I sometimes Ioften I always 30) Permanent injury or damage to my health or body Inever I rarely I sometimes Ioften I always 31) Low blood sugar interfering with important things I was doing Inever I rarely I sometimes Ioften I always 32) Becoming hypoglycemic during sleep Inever I rarely I sometimes Ioften I always 33) Getting emotionally upset and difficult to deal with Inever I rarely I sometimes Ioften I always Feel free to make any comments about your experience with hypoglycemia and any hypoglycemic episodes:_______________________________________________________ __________________________________________________________________________ DIABETIC RETINOPATHY 1. Do you get your eyes checked at least once a year? YES NO If no, when was your last eye exam?____________________________________________ 2. Have you ever been diagnosed with diabetic retinopathy (eye disease)? YES NO 3. Do you have any significant vision loss from your diabetes? YES NO If yes, please indicate the degree of loss and which eye(s). ____________________________ 4. Have you ever had laser treatment? YES NO If yes, please indicate which eye(s) was treated and the approximate date(s). _____________ ___________________________________________________________________________ YES NO 5. Have you ever had eye surgery? If yes, please indicate which type, to which eye(s), and the approximate dates. ____________ ___________________________________________________________________________ DIABETIC NEPHROPATHY 1. Have you ever been diagnosed with kidney disease? YES NO If yes, please indicate the approximate date of the diagnosis. ___________________________ 2. Have you ever been treated with any medication or blood pressure pill for kidney disease? YES NO If yes, please indicate the name of the medication and when you began taking it. ___________ ____________________________________________________________________________ 3. In the past year did you get your urine checked for protein? YES NO 4. Have you ever received kidney dialysis? YES NO If yes, type of dialysis, when it started and how long have you been on it? ________________ ____________________________________________________________________________ YES NO 5. Have you had a kidney transplant? If yes, when was it and what type of transplant? _____________________________________ DIABETIC NEUROPATHY 1. Do you have any loss of sensation, numbness, tingling in your hands or feet? YES NO If yes, please indicate the degree of sensory loss. mild moderate severe 2. On average, how often do you check your feet for ulcerations or infections? never less than 1 time a month 1-2 times a month 1-2 times week 3. Have you ever had a severe foot infection? YES NO daily If yes, please indicate the approximate date(s) this occurred. __________________________ 4. Have you ever had an amputation? YES NO If yes, please indicate when and to which limb. _____________________________________ AUTONOMIC NEUROPATHY 1. Do you regularly have any of the following symptoms? Nausea YES NO Vomiting YES NO Bloating YES NO Diarrhea YES NO Dizziness upon standing YES NO Problems with sexual function YES NO If yes, how often do the symptoms occur? less than 1 time a month 2 -3 times a month once week once a day more than once a day 2-3 times a week MEDICATIONS Besides insulin, please provide a list of medications you are currently taking. Be sure to include name, dose, frequency, reason for taking, approximate start date. Also include any over the counter medications, vitamins, herbal supplements. 1.___________________________________________________________________________ 2.___________________________________________________________________________ 3. __________________________________________________________________________ 4. __________________________________________________________________________ 5. __________________________________________________________________________ 6. __________________________________________________________________________ 7. __________________________________________________________________________ 8. __________________________________________________________________________ Provide your daily insulin regimen including: Basal insulin: type and dose _____________________________________________________ If you are on an insulin pump, please provide your 24 hour settings: ___________________________________________________________________________ Insulin to carbohydrate ratio: ____________________________________________________ Insulin to blood glucose correction: _______________________________________________ In order to determine an average amount of your blood glucose highs and lows, please check your blood sugar levels 7 times a day, before and after meals and before bedtime, for two days in a row. Please do not miss any recordings. DAY 1 DATE BEFORE AFTER BEFORE AFTER BEFORE AFTER BEFORE BREAKFAST BREAKFAST LUNCH LUNCH DINNER DINNER BEDTIME GLUCOSE LEVEL INSULIN DOSE INSULIN TYPE DAY 2 DATE GLUCOSE LEVEL INSULIN DOSE INSULIN TYPE BEFORE AFTER BEFORE AFTER BEFORE AFTER BEFORE BREAKFAST BREAKFAST LUNCH LUNCH LUNCH DINNER BEDTIME YOUR MEDICAL HISTORY CARDIAC (heart) problems 1. Have you ever seen a cardiologist (heart doctor)? Do you have (or ever had) any of the following: 2. High Blood Pressure 3. Heart Attack If yes, when was it? _________________________________ 4. Congestive Heart Failure 5. Abnormal Heart Testing If yes, please specify_________________________________ 6. Heart Procedures If yes, please specify _________________________________ 7. Heart Surgery If yes, please specify_________________________________ 8. Other heart problem? If yes, please specify__________________________________ VASCULAR (blood flow) problems 1. Have you ever seen a vascular doctor or vascular surgeon? YES NO YES YES NO NO YES YES NO NO YES NO YES NO YES NO YES NO YES YES YES NO NO NO Do you have (or ever have) any of the following: 2. Peripheral Vascular Disease 3. Poor Wound Healing 4. Amputation If yes, where and when________________________________ 5. Blood Clots 6. Stroke 7. Surgery If yes, please specify _________________________________ 8. Other vascular problems? If yes, please specify _________________________________ YES YES YES NO NO NO YES YES NO NO RESPIRATORY (breathing) problems 1. Have you ever seen a pulmonologist (lung specialist)? YES NO YES YES YES YES YES NO NO NO NO NO Do you have (or ever had) any of the following: 2. Lung Cancer 3. Asthma 4. Emphysema 5. Pulmonary Edema 6. Other respiratory problem? If yes, please specify _________________________________ NEUROLOGICAL (brain or nervous system) problems 1. Have you ever seen a neurologic specialist? Do you have (or ever had) any of the following: 2. Seizure (other than due to low blood sugar) or epilepsy? 3. Brain Tumor 4. Stroke 5. Cognitive Impairment 6. Other neurological problems? If yes, please specify __________________________________ GASTOINTESTINAL (stomach and bowel) problems 1. Have you ever seen a gastrointestinal doctor? Do you have (or ever had) any of the following: 2. Difficulty digesting food 3. Special dietary restrictions (other than because of your diabetes) 4. Gastroparesis 5. Ulcer 6. Stomach/Colon/Intestinal Cancer 7. Other gi problems? If yes, please specify __________________________________ YES NO YES YES YES YES YES NO NO NO NO NO YES NO YES YES YES YES YES YES NO NO NO NO NO NO RENAL (kidney) problems Do you have (or ever had) any of the following: 1. Kidney/Bladder problems YES NO 1.Difficulty urinating YES NO 2. Any degree of kidney dysfunction YES NO 5. Have you ever received kidney dialysis? If yes, when did dialysis start and for how long? ___________________________ 6. Have you ever had a kidney transplant? If yes, date of transplant_______________________________ MISCELLANEOUS Have you ever been diagnosed with any of the following? 1. HIV YES NO 2. Hepatitis B YES NO YES NO 3. Hepatitis C 4. Arthritis YES NO YES NO 5. Lupus 6. Sickle Cell Anemia YES NO 7. Tuberculosis YES NO YES NO 8. Cancer If yes, what type of cancer, when was it diagnosed, and how was it treated? ______________ ___________________________________________________________________________ 9. Do you have an active infection? YES NO If yes, please specify __________________________ 10. Have you ever had a transplant (other than kidney)? YES NO If yes, type of transplant and date_________________________ YES NO 10. Do you know your blood type? If yes, what is your blood type A B O AB 11. Do you have any allergies? YES NO If yes, please specify allergy and type of reaction ____________________________________ ____________________________________________________________________________ YOUR SURGICAL HISTORY Please provide a list of all surgeries you have had. Be sure to include type of surgery, date, and reason. 1 ___________________________________________________________________________ 2.___________________________________________________________________________ 3. __________________________________________________________________________ 4. __________________________________________________________________________ 5. __________________________________________________________________________ 6. __________________________________________________________________________ FAMILY HISTORY 1.Diabetes YES NO If yes, please specify family member relationship ____________________________________ 2.Cancer YES NO If yes, please specify family member relationship____________________________________ 3.Heart disease YES NO If yes, please specify family member relationship ____________________________________ COMMENTS 1.What is your biggest concern regarding your diabetes? ______________________________ 2.What do you expect will change after you receive an islet cell transplant? _______________ ____________________________________________________________________________ 3.What is your biggest concern regarding islet cell transplantation? ______________________ ____________________________________________________________________________ 4.What are your hopes regarding islet cell transplantation? _____________________________ ____________________________________________________________________________ QUESTIONS 1. Do you have any questions regarding islet cell transplantation? ______________________ ____________________________________________________________________________ ____________________________________________________________________________ ____________________________________________________________________________
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