Health Status and Quality of Life Questionnaire

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Appendix B. Questionnaire Section 1. Health Status

1. Would you say that in general your health is--?

1. Excellent 2. Very good 3. Good 4. Fair 5. Poor

6. Prefer not to respond

2. What kind of extracorporeal membrane oxygenation did you receive as a baby?

1. Venoarterial 2. Venovenous 3. Other

4. Don’t know/Not Sure 5. Prefer not to answer

Section 2: Healthy Days – Health-Related Quality of Life

3. Now thinking about your physical health, which includes physical illness and injury, for how many days during the past 30 days was your physical health not good?

__ Number of days 99 Prefer not to respond

4. Now thinking about your mental health, which includes stress, depression, and problems with emotions, for how many days during the past 30 days was your mental health not good?

__ Number of days 99 Prefer not to respond

5. During the past 30 days, for about how many days did poor physical or mental health keep you from doing your usual activities, such as self-care, work, or recreation?

__ Number of days 99 Prefer not to respond Section 3: Health Care Access

6. Do you have any kind of health care coverage, including health insurance, prepaid plans such as HMOs, or government plans such as Medicare or Indian Health Services?

1. Yes 2. No

3. Don’t know/Not Sure 4. Prefer not to answer

7. Which ONE of the following is your main source of health care coverage?

1. Private health insurance … own

2. Private health insurance … parents/guardians’ plan

3. Medicaid or Medicare (or other government sponsored program) 4. Military health insurance … own

5. Military health insurance … parents/guardians 6. No insurance

7. Don’t know/Not sure 8. Prefer not to respond

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routine checkup is a general physical exam, not an exam for a specific injury, illness, or condition.

1. Within past year (anytime less than 12 months ago) 2. Within past 2 years (1 year but less than 2 years ago) 3. Within past 5 years (2 years but less than 5 year ago) 4. 5 or more years ago

5. Don’t know/ Not sure 6. Prefer not to respond Section 4A: Chronic Health Conditions

Now I would like to ask you some questions about general health conditions.

Has a doctor, nurse, other health professional, or school teachers EVER told you that you had any of the following? For each, please answer “Yes,” “No,” “Not sure” or “Prefer not to respond”.

9. Have you EVER been told by a doctor, nurse, or other health professional that you have high blood pressure?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond

10. If yes, are you currently taking medicine for your high blood pressure?

1. Yes 2. No

11. Have you EVER been told by a doctor, nurse, or other health professional that you have had a Heart attack, also called a myocardial infraction?

1. Yes

2. No

12. Have you EVER been told by a doctor, nurse, or other health professional that you have had a Stroke?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond Section 4B: Chronic Health Conditions

13. Have you EVER been told by a doctor, nurse, or other health professional that you have Asthma?

1. Yes 2. No

14. Have you taken medication for asthma at any time during the past year?

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1. Yes 2. No

3. Don’t know/ Not sure 4. Prefer not to respond 15. Do you still have asthma?

1. Yes 2. No

16. Have you EVER been told by a doctor, nurse, or other health professional that you have (COPD) chronic obstructive pulmonary disease, emphysema, chronic bronchitis or chronic lung disease?

1. Yes 2. No

17. Have you taken any medicine for chronic obstructive pulmonary disease, emphysema, chronic bronchitis or chronic lung disease at any time during the past year?

1. Yes 2. No

Section 4C: Chronic Health Conditions

18. Have you EVER been told by a doctor, nurse, or other health professional that you have had any type of cancer?

1. Yes

2. No

19. Have you EVER been told by a doctor, nurse, or other health professional that you have a depression disorder (including depression, major depression, dysthymia, or minor

depression)?

1. Yes

2. No

20. Have you EVER been told by a doctor, nurse, or other health professional that you have Kidney disease? (Does not include kidney stones, bladder infection or inability to control urine flow)?

1. Yes

2. No

21. Have you EVER been told by a doctor, nurse, or other health professional that you have a vision problem in one or both eyes, even when wearing glasses?

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3. Don’t know/ Not sure 4. Prefer not to respond Section 4D: Chronic Health Conditions

22. Have you EVER been told by a doctor, nurse, or other health professional that you have Diabetes?

1. Yes

2. Yes, but female told only during pregnancy

3. No

4. No, pre-diabetes or borderline diabetes 5. Don’t know/ Not sure

23. Have you EVER been told by a doctor, nurse, or other health professional that you have gastroesophageal reflux (heartburn)?

1. Yes

2. No

24. Have you taken any medicine for gastroesophageal reflux (heartburn) at any time during the past year?

1. Yes 2. No

25. Have you EVER been told by a doctor, nurse, or other health professional that you have scoliosis or curved spine?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond Section 4E: Chronic Health Conditions

26. Have you EVER been told by a doctor, nurse, or other health professional that you have a hearing problem?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond 27. Do you wear a hearing aid?

1. Yes

2. No

28. Have you EVER been told by a doctor, nurse, or other health professional that you were not growing as much as other people your age?

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1. Yes

2. No

29. Do you have a ventriculoperitoneal shunt for hydrocephalus?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond Section 4F: Chronic Health Conditions

30. Have you EVER been told by a doctor, nurse, health professional, teacher or other educator that you have learning problems?

1. Yes

2. No

31. Do you have any trouble walking, talking or caring for yourself?

1. Yes

2. No

32. Do you have trouble paying attention?

1. Yes

2. No

33. Do you have trouble sitting still without fidgeting?

1. Yes

2. No

34 Do you have epilepsy (or seizures or convulsions)?

1. Yes

2. No

35. Do you have weakness or numbness in your right arm or leg?

1. Yes

2. No

36. Do you have weakness or numbness in your left arm or leg?

1. Yes

2. No

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1. Right 2. Left

3. Both equally well 4. Don’t know/ Not sure 5. Prefer not to respond

38. Have you ever been told that you have a diagnosis of attention deficit hyperactivity disorder?

1. Yes

2. No

39. Have you ever been told that you had autism?

1. Yes

2. No

3. Don’t know/Not Sure 4. Prefer not to respond

Section 5A. Demographics … Education and Employment 40. What is the highest grade or year of school you completed?

1. Never attended school or only attended kindergarten 2. Grades 1 through 8 (Elementary)

3. Grades 9 through 11 (Some high school) 4. Grades 12 or GED (High school graduate)

5. College 1 year to 3 years (Some college or technical school) 6. College 4 years or more (College graduate)

41. If you continued your education after college, what did you complete?

1. Post-graduate/professional training (No degree attained)

2. Post-graduate/profession degree (MS, MA, JD, MBA, PhD, MD) 3. Don’t know/ Not sure

4. Prefer not to respond 42. Are you currently…?

1. Employed for wages 2. Self-employed

3. Out of work for more than 1 year 4. Out of work for less than 1 year 5. A Homemaker

6. A Student 7. Retired

43. If employed and/or a student, what describes you best?

1. Full time employment (30 hours or more) 2. Part time employment (less than 30 hours)

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3. Full time student (12 or more credit hours per semester or equivalent), not working

4. Full time student, working full time (30 hours or more) 5. Full time student, working part time (30 hours or less)

6. Part time student (less than 12 credit hours per semester or equivalent), not working 7. Part time student, working full time

8. Part time student, working part time 9. Part time or full time student and disabled

10. Disabled but employed during the last 12 months 11. Don’t know/ Not sure

44. Are you limited in any activities because of physical, mental, or emotional problems?

1. Yes

2. No

45. Do you now have any health problem that requires you to use special equipment, such as a cane, a wheelchair, a special bed, or a special telephone?

1. Yes

2. No

Section 5B … Demographics: Marriage status, Family, Household Members 46 Are you …?

1. Married 2. Divorced 3. Widowed 4. Separated 5. Never married

6. A member of an unmarried couple 7. Don’t know/ Not sure

8. Prefer not to respond 47. How many children do you have?

1. None 2. 1 3. 2 4. 3

5. 4 or more

48. If you and your partner had a baby, was the baby healthy?

1. Yes

2. No

49. If female, have you tried to become pregnant, but couldn’t?

1. Yes

2. No

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50. If male, have you been told by a professional physician, nurse or health professional that you could not have children or were infertile?

1. Yes

2. No

51. If female, have you had problems with your menstrual periods?

1. Yes

2. No

4. Don’t know/ Not sure 5. Prefer not to respond Section 5C: Home and Living Situation

52 Home is the place where you live most of the year. What ONE choice best describes your home?

1. Own 2. Rent

3. Other arrangement (staying in a group home, with a friend, or with a family without paying rent)

4. Homeless

5. Don’t know/ Not sure.

53. The head of the household where you live is …?

1. Me

2. Biological or adoptive parent 3. Sibling

4. Grandparent

5. Other family member 6. Foster parent

7. Non-family member 8. Don’t know/ Not sure 9. Prefer not to respond

54. During the past year, have you or anyone in your household received any income from Supplementary Security Income (SSI), Social Security, welfare (ADC/AFDC), or other non-work related source?

1. Yes

2. No

3. Don’t know/ Not sure 4. Prefer not to respond Section 6: Healthy Days (Symptoms)

55. During the past 30 days, for about how many days have you felt sad, blue, or depressed?

__ Number of days

99 Prefer not to respond/ Not sure/Don’t know

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56. During the past 30 days, for about how many days have you felt worried, tense, or anxious?

__ Number of days

99 Prefer not to answer/ Not sure/Don’t know

57. During the past 30 days, for about how many days have you felt very healthy and full of energy?

__ Number of days

99 Prefer not to answer/ Not sure/Don’t know Section 7: Anxiety, Depression, Cognition, Risk Taking

58. Has a doctor or other healthcare provider EVER told you that you have an anxiety disorder (including acute stress disorder, anxiety, generalized anxiety disorder, obsessive- compulsive disorder, panic disorder, phobia, posttraumatic stress disorder, or social anxiety disorder)?

1. Yes

2. No

59. During the past 12 months, have you experienced confusion or memory loss that is happening more often or is getting worse?

1. Yes

2. No

60. If you describe the amount of risk-taking in life, which of the following best describes you?

1. Do not take any risks 2. Take few risks 3. Take some risks 4. Take lots of risks 5. Don’t know/ Not sure 6. Prefer not to respond

Section 8: Emotional Support and Life Satisfaction 61. In general, how satisfied are you with your life?

1. Very satisfied 2. Satisfied 3. Dissatisfied 4. Very dissatisfied 6. Don’t know/ Not sure 7. Prefer not to respond Section 9: Invitation

62. Are you willing to participate in additional, more detailed questionnaires?

1. Yes

2. No

3. Maybe