Islet Cell Transplant Program Intake Questionnaire

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? ______________________
____________________________________________________________________________
____________________________________________________________________________
____________________________________________________________________________