SAHRI:Cohort Study

==The basics of the editing this file==
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==History==
One of the topics we want to discuss how to design a study. What is the best way to explain how to design a study: how about, designing one online. This is an experiment in the power of Wiki and SAHRI's idea of using WIKI. Hopefully, there will be success at the end. 
Please see our discussion on our email list-serv SAHRI Group for details of the discussion.
==Questions Raised==
===Question 1: Scope of the study===
===Question 2: Who to study? (participants); number etc.===
===Question 3: How to administer===
===Question 4: What to include in the questionnaire?===
Please note that this survey was initially developed in 2003 by Biren Saraiya with subsequent comments from Nayan Kothari MD, Deborrah Carr (Rutgers University) PhD.
====1. Demographic Information====
What is your age? _______
Please indicate your sex: Male ______ Female _______
Where were you born? 
_______ In South Asia
_______ In USA/Canada
_______ In Europe
_______ In Africa
Please list of languages you speak (including Hindi, English, and any regional languages)
_________ ___________ ___________ ___________ ___________
Which describes your education level?
_______ never went to school
_______ less than 7th grade 
_______ finished high school
_______ finished 2 or 4 year college
_______ finished masters or doctorate
What is your height?
________ cm or _____ ft, _____ inches
What is your weight?
________ lbs or ________ kg
====2.	Immigration Status====
Please indicate your immigration status
_______ US Citizen
_______ Permanent resident (green card holder)
_______ Visitor visa
_______ Student/Business/Job visa
_______ Illegal
How long have you resided in the United States?
_______ < 1 year
_______ 1-5 years
_______ 5-10 years
_______ 10-20 years
_______ more than 20 years
_______ Born in US? 2nd Generation??
::For almost all questions, you should have a last category called “Other, specify;_______________” so people can indicate answers that you have not yet thought of. (Carr)
::Also, you might want to check out the surveys listed on this website. The MIDUS, in particular, has very detailed questions about health behaviors and symptoms. If you model your questions after nationally representative studies, you can compare your values with theirs, and answer the question of comparability. (carr)
====3.	Access to Health Care==== 
Please tell us about your health care provider
Is your primary care doctor: (check all that apply)
_______ Do not have a doctor
_______ A medical doctor
_______ A Homeopathic doctor
_______ A Ayurvedic doctor
_______ In South Asia
_______ In the US
_______ A South Asian (someone from same country as you)
_______ Non-Asian
_______ Male
_______ Female
How did you select your primary care doctor?
_______ (s)he was in my insurance plan
_______ (s)he is South Asian 
_______ (s)he speaks my language
_______ (s)he understands my diseases
Do you have health insurance?
_______ No insurance
_______ an HMO
_______ a PPO
_______ Medicare
_______ Medicaid
_______ An insurance bought in South Asia
How often do you see your doctor?
_______ only when you are sick
_______ for routine check ups even when not sick
_______ once a month
_______ once every 1-3 months
_______ once every 3-6 months
_______ less than once a year
What types of medications do you take?
_______ prescribed by your medical doctors only
_______ herbal medications (please list ___________________________________)
_______ vitamins (please list __________________________________ )
_______ supplements (please list __________________________________ )
====4.	views on exercise and diet====
Please indicate your diet (check all that apply)
_______ Pure vegetarian – no eggs, no meat, no fish
_______ Vegetarian but eat eggs
_______ Eat all meats
How often do you exercise? 
:: Some suryeys ask separately about light vs. moderate/intense exercise. (carr)
_______ Never
_______ Once a month
_______ Once a week
_______ Three times a week
_______ Every day
Each time you exercise, how long do you exercise for?
_______ minutes
What exercises do you do when you exercise?
_______ run/jog
_______ Walk
_______ Play Basketball
_______ Play Tennis
_______ Play golf
_______ Swimming
_______ treadmill or fixed bicycle
_______ Other (please list: __________________________________________)
====5.	Health Screening====
Please indicate if you have had following screenings done
_______ cholesterol level checked in past 3 years
_______ mammogram (if you are a female age 40 and up) in last 2 year
_______ fecal occult blood card to check for blood in stool in past 3 years
_______ sigmoidoscopy or colonoscopy in past 5 years
_______ pap smear (for females only) in past 3 years
_______ have you ever had abnormal pap smear?
_______ Bone Scan for osteoporosis 
Calcium Intake
Please indicate how much calcium intake you have during an average day?
________ how many glasses of 8 oz. milk?
________ calcium supplement (how many milligrams?)
________ normal cheese/yogurt intake
Vaccinations:
Have you ever had a pneumococcal vaccine (to prevent pneumonia from Strep. Pneumoniae)
Have you ever had a flu vaccine?
If you have young children (ages 12 and under), are their vaccinations up to date?
_____ MMR
______ chicken pox
______ Hepatitis B
_______ Tetanus, Polio, Diptheria
_______ Other
====6.	Personal Health Information====
:: Please indicate all diagnosis that you have: Most surveys specify, check the conditions “THAT A DOCTOR HAS TOLD YOU THAT YOU HAVE.” (Carr)
_______ High Blood Pressure 
_______ Diabetes
_______ High cholesterol or high triglycerides
_______ Heart disease (including history of heart attack or angina)
_______ Stroke
_______ Kidney disease
_______ Emphysema or chronic obstructive pulmonary disease
_______ Asthma
_______ Cancer (list what kind _______________________________ )
_______ Osteoporosis or osteopenia
_______ Arthritis
_______ Peptic ulcer or GERD or reflux disease
_______ Liver disease (specify)
_______ Depression
====7.	Family Health Information====
Please indicate all diagnosis that someone in your family has:
Diagnosis	 Father	 Mother	Siblings	Children
High Blood pressure				
Diabetes				
High Cholesterol or high triglycerides				
Heart disease				
Stroke				
Kidney Diesease				
Asthma				
Emphysema or Chronic Obstructive Pulmonry Disease				
Cancer (please list)				
Osteoporosis				
Arthritis				
Peptic Ulcer Diseases or reflux disease				
Liver disease				
Depression
====8.	Medication Use====
Please indicate which medications do you take regularly?
______ Aspirin		
______ medications for high blood pressure (please list ____________________)
______ for diabetes (please list _______________________________ )
______ for cholesterol (please list _______________________ )
______ for ulcer disease or gastritis (prevacid, nexium, protonix, etc.)
______ for stomach pains (over the counter – Zantac, Pepcid, Mylanta, etc.)
______ for arthritis or aches and pains (ibuprofen, motrin, advil, Tylenol)
______ diuretics (furosemide/lasix, hydrochlorothiazide, spironolactone)
______ sleep medication
______ antidepressant 
______
??? aspirin, statin, b-blocker, ace-i
====9.	Tobacco and Alcohol use====
Have you ever smoked? If no, go to next question.
Yes ______		No _______
Do you still smoke? 
Yes ______		No _______ if no, indicate when did you quit? ________
How many years have you smoked for? ______ years
Do you chew tobacco or tobacco products? 
Yes ______ please indicate which kind ______________
No ______ 
Do you drink alcohol? 
No ______
Yes ______ What type and how much a day?
	Beer ______ cans a day
	Mixed drinks ______ drinks a day
	Wine _____ glasses a day
CAGE Questionnaire
Indicate Yes by checking off the boxes:
________ Have you ever thought about cutting down on your drinking?
_______ have your friends and family been annoyed with your drinking?
________ Do you feel guilty about your drinking?
________ Do you ever need a drink in the morning to get you through the day?
If you answered yes to any of the above questions, have you discusses your drinking with your doctor? If not, we would advise you to do so.
Depression Screen:
________ Have you ever been diagnosed with depression? 
________ Do you feel depressed?
________ Has the feeling of depression been for more than 6 months?
________ Do you have trouble sleeping (either too much sleep or not being able to sleep?)
________ Do you have trouble with appetite? (either no appetite or too much appetite?)
________ Have you ever had thoughts of commtting suicide?
________ Do you have guilty feelings about things in your life?
_________ Do you enjoy 
====10.	End of Life Care====
Do you know what an advanced care directive (or living will or health care proxy) is? 
::I would break this into two: living will vs. DPAHC (Carr)
Do you have an advanced care directive?
Would you like information on advanced care directive?
If you were unable to make a decision regarding your health care for yourself, who would you expect to make the decision for you? 
_______ Spouse
_______ First Son
_______ Daughter
_______ Sibling
_______ Parent 
::You should ask this if they do NOT have a DPAHC. Otherwise, you can ask, who have you actually named? (Carr)
If you were to be diagnosed with a serious illness such as cancer, would you want to know the diagnosis?
_______ Yes 	________ No
 
If your spouse was to be diagnosed with a serious illness such as cancer, would you want them to know the diagnosis? 
_______ yes		________ No
If your mother was to be diagnosed with a serious illness such as cancer, would you want them to know the diagnosis?
_______ Yes		_______ No 
If your father was to be diagnosed with a serious illness such as cancer, would you want them to know the diagnosis?
_______ Yes		_______ No 
:: Another question that I’ve used on surveys: Do your religious beliefs inform your preferences for health care/end of life care? (carr)
Death and Dying
Please indicate by grading the importance of following factors in the order of your preference (most important = 1 to least important = 10)
If you had a choice, where would you want to die?
_______ at home
_______ at nursing home
_______ at a hospital
Do you believe in life after death?
_______ Yes		_______ No 
:: Biren???? how to ask questions regarding preferences for artificial means of treatment? Should you ask about specific scenarios vs. general question like 
What is more important to you?
________ to die without any discomfort
________ to live as long as you can
Give the above questions, if you had an incurable cancer or any other disease what would you want the goal of your treatment to be
_______ Aggressive medical care (such as mechanical ventilation = machine helping you breath; tube feedings) regardless of prognosis, and regardless of discomfort
_______ Aggressive medical care if there is a good chance of recovery (to good function)
_______ Aggressive medical care if there is a small chance of recovery (of function)
_______ No aggressive treatment if I have reached a certain age
_______ No aggressive treatment regardless of my age. 
_______ 
Do you know what hospice care is?
_______ Yes 	________ No
If no, it is _______ describe Hospice care
Pediatrics:
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===Question 5: Finding sister-organizations that may be of help===
Physician Organizations:
[American Association of Physicians of Indian Origin]
[Association of Pakistani Physicians of North America]
===Question 6: Literature Review===
===Question 7: Identify Centers to administer the survey===
Doesn't this depend on whether or not we administer it via internet? My thoughts were as follows (based on a study done by someone at Harvard during my intern year on the internet).
1. We would contact the participants via email (and a key to someone how identify them to the database). 
2. We will keep track of them using their email address.
3. They will fill out survey at their leisure (within 2-3 weeks). We will send out a reminder email if they have not been filled in that time (giving them 2 more weeks). 
4. At this point, we have obtained our baseline survey. AAAAH! this is where we need a remote center.....
: how about we get them to get to a standardize lab like LabCorp or Quest. They take our slip to them.... thoughts?
5. Every so often (6 mths, 12 months, 2 years), we re-administer the survey.
6. Once we have a cohort, we can select out some of them for specific stuff such as food diary etc.
===Question 8: develop a pilot project===
==Sample Cohort Questionnaire==
See Above.