17 Paper-Pen Proxy

Form: 1D Vers: 01 OMB No. 0925-0406

Expiration Date: xx/xx/2016

<AHS Logo> Agricultural Health Study

Health Follow Up

Attachment 26.4: Agricultural Health Study Phase IV Health Follow-Up Proxy Paper & Pen Survey

<Insert Proxy-appropriate intro text here>

Instructions:

• Please use dark blue or black ballpoint pen.

• Based on your answers, some questions will be skipped. If there’s an arrow next to the answer you chose, please follow it for skip instructions.

• When we ask for dates or ages, if you can’t remember the exact year or how old the study participant was when something happened, please give us your best guess.

• When we ask how many years the study participant did something, please round to the nearest whole number.

Fill in the bubbles COMPLETELY for each of the questions in this form.

Like this:  Yes Not like this: 

41666201

Collection of this information is authorized by The Public Health Service Act (42 USC 285l). Rights of study participants are protected by The Privacy Act of 1974. Participation is voluntary, and there are no penalties for not participating or withdrawing from the study at any time. Refusal to participate will not affect your benefits in any way. The information collected in this study will be kept private to the extent provided by law. Names and other identifiers will not appear in any report of the study. Information provided will be combined for all study participants and reported as summaries. You are being contacted by mail to complete this health follow-up survey because as a member of the Agricultural Health Study your continued involvement can help us learn more about how agricultural and environmental factors may affect the health of farmers and their families.

Public reporting burden for this collection of information is estimated to average 10 to 15 minutes per response, including the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to: NIH, Project Clearance Branch, 6705 Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0406). Do not return the completed form to this address.

Before you get started, we need you to confirm the information located on the label on the front cover of this survey. Please look at the label that indicates the name and date of birth of the person that this survey is for and about.

A. Which of the following statements is true about the name on the label?

〇 1. This name is correct

〇 2. This name was correct, but it has since changed

〇 3. This name is incorrect  Stop! Please call our Study Line at 1–855–443–2692. If asked to leave a message, please leave us your name, phone number (including area code), and the best time of day to reach you. We apologize for the inconvenience.

B. Which of the following statements is true about the date of birth on the label?

〇 1. The date of birth is correct

〇 2. The date of birth is incorrect  Stop! Please call our Study Line at 1–855–443–2692. If asked to leave a message, please leave us your name, phone number (including area code), and the best time of day to reach you. We apologize for the inconvenience.

Tobacco and Alcohol

1. Did he/she smoke a total of 100 cigarettes or more during his/her lifetime?

〇 Yes

〇 No  Skip to 5

2. How old was he/she when he/she first started smoking cigarettes?

|__|__|__| Age

3. How old was he/she when he/she last smoked cigarettes?

|__|__|__| Age

4. Thinking about all the years that he/she smoked, about how many cigarettes per day did he/she usually smoke on days when he/she smoked?

|__|__|__| Cigarettes per day

5. The following questions ask about drinking alcoholic beverages including beer or ale, wine, wine coolers, champagne, mixed drinks, and liquor.

When you are asked about a “drink,” think about a 12-ounce bottle or can of beer, a 5-ounce glass of wine or champagne, one wine cooler, one shot of liquor, or one mixed drink or cocktail.

Did he/she ever drink any type of alcoholic beverage?

〇 Yes

〇 No  Skip to 7 (General Health)

6. How old was he/she when he/she last consumed an alcoholic beverage?

|__|__|__| Age

General Health

7. About how tall was he/she? Please answer in feet and inches, and round to the nearest inch.

|__| Feet |__|__| Inches

8. About how much did he/she weigh?

|__|__|__| Pounds

9. Has anyone in his/her immediate family related by blood (his/her mother, father, sisters, brothers, or children) ever been diagnosed with asthma?

〇 Yes

〇 No

10. Has anyone in his/her immediate family related by blood (his/her mother, father, sisters, brothers, or children) ever been diagnosed with Parkinson’s Disease?

〇 Yes

〇 No

11. Has anyone in his/her immediate family related by blood (his/her mother, father, sisters, brothers, or children) ever had cancer?

〇 Yes

〇 No  Skip to 13

12. What type(s) of cancer? Mark all that apply.

〇 Bladder

〇 Bone

〇 Brain

〇 Breast

〇 Cervical

〇 Colon or rectal

〇 Esophagus

〇 Kidney

〇 Leukemia

〇 Liver

〇 Lung

〇 Lymphoma

〇 Melanoma

〇 Multiple myeloma

〇 Ovarian

〇 Pancreatic

〇 Prostate

〇 Stomach

〇 Thyroid

〇 Uterine or endometrial

〇 Other type of cancer

〇 Don’t know type

13. Was the study participant himself/herself ever diagnosed with or had cancer?

〇 Yes

〇 No  Skip to 15

14. What type(s) of cancer? Mark all that apply.

〇 Bladder

〇 Bone

〇 Brain

〇 Breast

〇 Cervical

〇 Colon or rectal

〇 Esophagus

〇 Kidney

〇 Leukemia

〇 Liver

〇 Lung

〇 Lymphoma

〇 Melanoma

〇 Multiple myeloma

〇 Ovarian

〇 Pancreatic

〇 Prostate

〇 Stomach

〇 Thyroid

〇 Uterine or endometrial

〇 Other type of cancer

〇 Don’t know type

Health Conditions

15. These questions are about medical conditions. Please only report conditions that were diagnosed by a doctor or other health professional. We are interested in what age he/she was diagnosed with a specific condition. If you do not know the exact age, please give us your best guess.

Was he/she ever diagnosed with Parkinson’s disease?

〇 Yes

〇 No  Skip to 20

16. How old was he/she when first diagnosed with Parkinson’s disease?

|__|__|__| Age

17. Was the diagnosis made or confirmed by a neurologist or movement disorder specialist?

〇 Yes

〇 No

18. Did he/she ever take any prescribed medicines for Parkinson’s disease? Examples include:

Carbidopa or levodopa (brand names such as Sinemet, Stalevo, or Parcopa);

Mirapex or Pramipexole; Requip or Ropinirole; Permax or Pergolide

〇 Yes

〇 No  Skip to 20

19. Did his/her symptoms ever improve after taking any of these medicines?

〇 Yes

〇 No

20. Was he/she ever diagnosed with a heart attack (or myocardial infarction)?

〇 Yes

〇 No  Skip to 22

21. How old was he/she when first diagnosed with a heart attack (or myocardial infarction)?

|__|__|__| Age

22. Was he/she ever diagnosed with depression?

〇 Yes

〇 No  Skip to 24

23. How old was he/she when first diagnosed with depression?

|__|__|__| Age

24. Was he/she ever diagnosed with high blood pressure or hypertension?

〇 Yes

〇 No  Skip to 26

25. How old was he/she when first diagnosed with high blood pressure or hypertension?

|__|__|__| Age

26. Was he/she ever diagnosed with heart failure?

〇 Yes

〇 No  Skip to 28

27. How old was he/she when first diagnosed with heart failure?

|__|__|__| Age

28. Was he/she ever diagnosed with a stroke? Do not include TIAs or mini-strokes.

〇 Yes

〇 No  Skip to 30

29. How old was he/she when first diagnosed with a stroke?

|__|__|__| Age

30. Was he/she ever diagnosed with asthma?

〇 Yes

〇 No  Skip to 32

31. How old was he/she when first diagnosed with asthma?

|__|__|__| Age

32. Was he/she ever diagnosed with Farmer’s Lung?

〇 Yes

〇 No  Skip to 34

33. How old was he/she when first diagnosed with Farmer’s Lung?

|__|__|__| Age

34. Was he/she ever diagnosed with idiopathic pulmonary fibrosis?

〇 Yes

〇 No  Skip to 36

35. How old was he/she when first diagnosed with idiopathic pulmonary fibrosis?

|__|__|__| Age

36. Was he/she ever diagnosed with emphysema?

〇 Yes

〇 No  Skip to 38

37. How old was he/she when first diagnosed with emphysema?

|__|__|__| Age

38. Was he/she ever diagnosed with chronic bronchitis?

〇 Yes

〇 No  Skip to 40

39. How old was he/she when first diagnosed with chronic bronchitis?

|__|__|__| Age

40. Was he/she ever diagnosed with chronic obstructive pulmonary disease (COPD)?

〇 Yes

〇 No  Skip to 42

41. How old was he/she when first diagnosed with chronic obstructive pulmonary disease (COPD)?

|__|__|__| Age

42. Was he/she ever diagnosed with diabetes?

〇 Yes

〇 No  Skip to 46

43. How old was he/she when first diagnosed with diabetes?

|__|__|__| Age

44. Did he/she ever take any prescribed medicines for diabetes?

〇 Yes

〇 No  Skip to 46

45. Did he/she ever take insulin?

〇 Yes

〇 No

46. Was he/she ever diagnosed with thyroid disease or thyroid problems?

〇 Yes

〇 No  Skip to 53

47. Was he/she ever diagnosed with an overactive thyroid (hyperthyroidism)?

〇 Yes

〇 No  Skip to 50

48. How old was he/she when first diagnosed with an overactive thyroid?

|__|__|__| Age

49. Was this Graves’ disease or some other type of thyroid condition that caused the overactive thyroid gland?

〇 Graves’ disease

〇 Other overactive thyroid condition

〇 Don’t know

50. Was he/she ever diagnosed with an underactive thyroid (hypothyroidism)?

〇 Yes

〇 No  Skip to 53

51. How old was he/she when first diagnosed with an underactive thyroid (hypothyroidism)?

|__|__|__| Age

52. Was this thyroiditis, sometimes called Hashimoto’s thyroiditis, or was this some other type of thyroid condition that caused the underactive thyroid gland?

〇 Thyroiditis (also called Hashimoto’s thyroiditis)

〇 Other underactive thyroid condition

〇 Don’t know

53. Was he/she ever diagnosed with kidney stones?

〇 Yes

〇 No  Skip to 56

54. How old was he/she when first diagnosed with kidney stones?

|__|__|__| Age

55. How many times has he/she had kidney stones?

|__|__| Times

56. Was he/she ever diagnosed with kidney disease? Do not include kidney stones.

〇 Yes

〇 No  Skip to 60

57. How old was he/she when first diagnosed with kidney disease?

|__|__|__| Age

58. Was he/she ever treated with dialysis?

〇 Yes

〇 No  Skip to 60

59. How old was he/she when first treated with dialysis?

|__|__|__| Age

60. Was he/she ever diagnosed with rheumatoid arthritis (an autoimmune disease)? Do not include osteoarthritis (the most common type of arthritis).

〇 Yes

〇 No  Skip to 64

61. How old was he/she when first diagnosed with rheumatoid arthritis?

|__|__|__| Age

62. Did he/she see a rheumatologist (a physician who specializes in bone, joint, and skin diseases) for rheumatoid arthritis?

〇 Yes

〇 No

63. Did he/she ever take any of the following medicines for rheumatoid arthritis?

Mark an answer for each row below:	Yes	No	Don’t know
a. Hydroxychloroquine or chloroquine (Plaquenil), Methotrexate (Rheumatrex or Trexall)	〇	〇	〇
b. Leflunomide (Arava), Sulfasalazine (Azulfidine)	〇	〇	〇
c. Biologics, given by infusion or injection, such as infliximab (Remicade), adalimumab (Humira), etanercept (Enbrel), rituximab (Rituxan). Do not include steroid injections in the joints.	〇	〇	〇

64. Was he/she ever diagnosed with lupus?

〇 Yes

〇 No  Skip to 68

65. How old was he/she when first diagnosed with lupus?

|__|__|__| Age

66. Did he/she see a rheumatologist (a physician who specializes in bone, joint, and skin diseases) for lupus?

〇 Yes

〇 No

67. Did he/she ever take any of the following medicines for lupus?

Mark an answer for each row below:	Yes	No	Don’t know
a. Hydroxychloroquine or chloroquine (Plaquenil), Methotrexate (Rheumatrex or Trexall)	〇	〇	〇
b. Azathioprine (Imuran), Cellcept, Cytoxan, or Cyclosporine	〇	〇	〇
c. Biologics, given by infusion or injection, such as belimumab (Benlysta). Do not include steroid injections in the joints or skin.	〇	〇	〇

68. Was he/she ever diagnosed with Sjögren’s disease?

〇 Yes

〇 No  Skip to 72

69. How old was he/she when first diagnosed with Sjögren’s disease?

|__|__|__| Age

70. Did he/she see a rheumatologist (a physician who specializes in bone, joint, and skin diseases) or ear, nose and throat specialist for Sjögren’s disease?

〇 Yes

〇 No

71. Did he/she ever take any of the following medicines for Sjögren’s disease?

Mark an answer for each row below:	Yes	No	Don’t know
a. Hydroxychloroquine or chloroquine (Plaquenil), or Methotrexate (Rheumatrex or Trexall)	〇	〇	〇
b. Pilocarpine (Salagen) or Cevimeline (Evoxac), or Cyclosporine Ophthalmic (Restasis)	〇	〇	〇
c. Biologics, given by infusion or injection, such as Rituximab (Rituxan)	〇	〇	〇

72. Was he/she ever diagnosed with sarcoidosis?

〇 Yes

〇 No  Skip to 74

73. How old was he/she when first diagnosed with sarcoidosis?

|__|__|__| Age

74. Was he/she ever diagnosed with pesticide poisoning?

〇 Yes

〇 No  Skip to 77

75. How old was he/she when first diagnosed with pesticide poisoning?

|__|__|__| Age

76. How many times was he/she poisoned by pesticides?

|__|__| Times

77. Did he/she ever have a head injury requiring medical attention?

〇 Yes

〇 No  Skip to 81

78. Did he/she ever have a head injury that resulted in loss of consciousness (got knocked out)?

〇 Yes

〇 No  Skip to 81

79. How old was he/she the first time he/she lost consciousness from a head injury?

|__|__|__| Age

80. How many times did he/she have a head injury with loss of consciousness?

|__|__| Times

81. Did he/she ever have hay fever, seasonal allergies or allergic rhinitis, whether or not it was diagnosed by a doctor?

〇 Yes

〇 No

82. Date this form was completed: |__|__| / |__|__| / |__|__|__|__|

Month Day Year

83. Thank you for completing the AHS Health Follow-up! Can we contact you again

in the future?

〇 Yes  Please go to next page to fill out the contact information sheet.

〇 No

Contact Information

We would like to make sure that our records include your accurate contact information should we need to contact you in the future.

1a. Please record your phone number(s) in the spaces provided below.

Phone Numbers:

HOME: (|__|__|__|) |__|__|__| - |__|__|__|__|

WORK: (|__|__|__|) |__|__|__| - |__|__|__|__|

CELL: (|__|__|__|) |__|__|__| - |__|__|__|__|

OTHER:(|__|__|__|) |__|__|__| - |__|__|__|__|

What is the best number to reach you? □ Home □ Work □ Cell □ Other

1b. If you have an E-mail address or multiple E-mail addresses, then please write them in the space below.

E-mail Address: |__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|

E-mail Address: |__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|

E-mail Address: |__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|

1c. What is your preferred method of contact? □ Phone □ Email □ Mail

2. Please record your mailing address in the space provided below.

Address 1

|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|

Address 2

|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__|__| |__|__| |__|__|__|__|__|

City State Zip Code

Finally, we have just a two more questions we need answered that will help us better understand the responses you gave us about the Agricultural Health Study participant.

3. What is your relationship to the person whose name is printed on the cover of this questionnaire?

〇 1. Spouse

〇 2. Sibling

〇 3. Child

〇 4. Grandchild

〇 5. Parent

〇 6. Other relative

〇 7. Guardian

〇 8. Friend

〇 9. Other

4. How long have you known the person whose name is printed on the cover of this questionnaire?

|__|__|__| # Years

1