SAHRI:Cohort Study

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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 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: </nowiki>

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 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.

Sample Cohort Questionnaire

See Above.