ISLET CELL TRANSPLANT PROGRAM INTAKE QUESTIONNAIRE DEMOGRAPHIC INFORMATION INSURANCE INFORMATION PHYSICIAN INFORMATION

Transcription

1 ISLET CELL TRANSPLANT PROGRAM INTAKE QUESTIONNAIRE Last Name First Name Middle Initial Date of Birth Social Security Number DEMOGRAPHIC INFORMATION Address City State Zip 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 City State Zip Name of primary care physician Telephone Fax Address City State Zip Name of other physician Specialty Telephone Fax Address City State Zip Name of other physician Specialty Telephone Fax Address City State Zip

2 PERSONAL INFORMATION 1. Who is your significant other? Name Relationship 2. Do you have a Power of Attorney for Healthcare? YES NO 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 5. Do you currently use a form of birth control? YES NO NA 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 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) High School (9-12) Attended College/Trade School Associate Degree Bachelors Degree Masters Degree Doctoral Degree 6. Employment Status: Not Working due to Disability Not Working by Choice 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? YES NO 6. Have you been on insulin for more than 5 years? YES 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 per day or using an insulin pump? YES NO 11. Do you experience low blood sugars that you are unaware of and require the assistance of another person? YES NO

4 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) CLARKE HYPOGLYCEMIC INDEX DIABETES SURVEYS 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)

5 never once or twice every other month once a month more than once a month 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? mg/dl mg/dl 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. 2. Feeling that my doctor doesn t know enough about diabetes and diabetes care.

6 3. Feeling angry, scared, and/or depressed when I think about living with diabetes. 4. Feeling that my doctor doesn t give me clear enough directions on how to manage my diabetes. 5. Feeling that I am not testing my blood sugars frequently enough. 6. Feeling that I am often failing with my diabetes regimen. 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). 8. Feeling that diabetes controls my life. 9. Feeling that my doctor doesn t take my concerns seriously enough. 10. Not feeling confident in my day-to-day ability to manage diabetes. 11. Feeling that I will end up with serious long-term complications, no matter what I do. 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

7 13. Feeling that friends or family don t appreciate how difficult living with diabetes can be. 14. Feeling overwhelmed by the demands of living with diabetes. 15. Feeling that I don t have a doctor who I can see regularly about my diabetes. 16. Not feeling motivated to keep up my diabetes self-management. 17. Feeling that friends or family don t give me the emotional support that I would like. 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 2) Tried to keep my blood sugar above 150 3) Reduced my insulin when my blood sugar was low 4) Measured my blood sugar six or more times a day 5) Made sure I had someone with me when I go out

8 6) Limited my out of town travel 7) Limited my driving (car, truck, bike) 8) Avoided visiting friends 9) Stayed at home more than I liked 10) Limited my exercise/physical activity 11) Made sure other people were around 12) Avoided sex 13) Kept my blood sugar higher than usual in social situations 14) Kept my blood sugar higher than usual when doing important tasks 15) Had people check on me several times during the day and night 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 17) Not having food, fruit, or juice available 18) Passing out in public 19) Embarrassing myself or my friends in a social situation

9 20) Having a hypoglycemic episode while alone 21) Appearing stupid or drunk 22) Losing control 23) No one being around to help me during a hypoglycemic episode 24) Having a hypoglycemic episode while driving never rarely sometimes often always 25) Making a mistake or having an accident 26) Getting a bad evaluation or being criticized 27) Difficulty thinking clearly when responsible for others 28) Feeling lightheaded or dizzy 29) Accidentally injuring myself or others 30) Permanent injury or damage to my health or body 31) Low blood sugar interfering with important things I was doing 32) Becoming hypoglycemic during sleep 33) Getting emotionally upset and difficult to deal with Feel free to make any comments about your experience with hypoglycemia and any hypoglycemic episodes:

10 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). 5. Have you ever had eye surgery? YES NO 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? 5. Have you had a kidney transplant? YES NO 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 daily 3. Have you ever had a severe foot infection? YES NO

11 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 2-3 times a week once a day more than once a day 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 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.

12 DAY 1 DATE GLUCOSE LEVEL INSULIN DOSE INSULIN TYPE BEFORE BREAKFAST AFTER BREAKFAST BEFORE LUNCH AFTER LUNCH BEFORE DINNER AFTER DINNER BEFORE BEDTIME DAY 2 DATE GLUCOSE LEVEL INSULIN DOSE INSULIN TYPE BEFORE BREAKFAST AFTER BREAKFAST BEFORE LUNCH AFTER LUNCH BEFORE LUNCH AFTER DINNER BEFORE BEDTIME

13 YOUR MEDICAL HISTORY CARDIAC (heart) problems 1. Have you ever seen a cardiologist (heart doctor)? YES NO Do you have (or ever had) any of the following: 2. High Blood Pressure YES NO 3. Heart Attack YES NO If yes, when was it? 4. Congestive Heart Failure YES NO 5. Abnormal Heart Testing YES NO If yes, please specify 6. Heart Procedures YES NO If yes, please specify 7. Heart Surgery YES NO If yes, please specify 8. Other heart problem? YES NO If yes, please specify VASCULAR (blood flow) problems 1. Have you ever seen a vascular doctor or vascular surgeon? YES NO Do you have (or ever have) any of the following: 2. Peripheral Vascular Disease YES NO 3. Poor Wound Healing YES NO 4. Amputation YES NO If yes, where and when 5. Blood Clots YES NO 6. Stroke YES NO 7. Surgery YES NO If yes, please specify 8. Other vascular problems? YES NO If yes, please specify YES NO RESPIRATORY (breathing) problems 1. Have you ever seen a pulmonologist (lung specialist)? YES NO Do you have (or ever had) any of the following: 2. Lung Cancer YES NO 3. Asthma YES NO 4. Emphysema YES NO 5. Pulmonary Edema YES NO 6. Other respiratory problem? YES NO If yes, please specify

14 NEUROLOGICAL (brain or nervous system) problems 1. Have you ever seen a neurologic specialist? YES NO Do you have (or ever had) any of the following: 2. Seizure (other than due to low blood sugar) or epilepsy? YES NO 3. Brain Tumor YES NO 4. Stroke YES NO 5. Cognitive Impairment YES NO 6. Other neurological problems? YES NO If yes, please specify GASTOINTESTINAL (stomach and bowel) problems 1. Have you ever seen a gastrointestinal doctor? YES NO Do you have (or ever had) any of the following: 2. Difficulty digesting food YES NO 3. Special dietary restrictions (other than because of your diabetes) YES NO 4. Gastroparesis YES NO 5. Ulcer YES NO 6. Stomach/Colon/Intestinal Cancer YES NO 7. Other gi problems? YES NO If yes, please specify 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 3. Hepatitis C YES NO 4. Arthritis YES NO 5. Lupus YES NO 6. Sickle Cell Anemia YES NO 7. Tuberculosis YES NO 8. Cancer YES NO If yes, what type of cancer, when was it diagnosed, and how was it treated?

15 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 10. Do you know your blood type? YES NO 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 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?

16 QUESTIONS 1. Do you have any questions regarding islet cell transplantation?