9 Paper and Pencil

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

Expiration Date: xx/xx/2016

<AHS Logo> Agricultural Health Study

Health Follow Up

Attachment 25.4: Phase IV Health Follow-Up Participant Paper & Pen Survey

Thank you for your participation in the Agricultural Health Study!

Over the past 20 years, you have contributed to this study. We truly appreciate your effort and time!

We need you! Your answers will ensure that the study results best reflect the experience of all farm families. This will help future generations of farmers live healthier lives.

Please complete this survey regardless of your age, health status, or whether or not you are still farming. We want to hear from everyone!

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 you were when something happened, please give us your best guess.

• When we ask how many years you 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: 

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 25 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.

41664201

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.

C. We ask that the person listed on the label fill out the form. Sometimes this is not possible…

Mark here if you are filling this out for yourself.

Mark here if someone is helping you fill out this survey by either reading the questions to you and/or filling in the bubbles for you.

Mark here if the person whose name is on the label cannot answer the questions for themselves, and you are completing this survey on their behalf.

Farming and General Questions

1. Is your current home located on a farm? A farm is defined as any place from which $1,000 or more of agricultural products would normally be sold during the year.

〇 Yes

〇 No  Skip to 3

2. In the past 12 months, how many total acres of crops were grown on this farm?

〇 None

〇 Less than 5 acres

〇 5–49 acres

〇 50–199 acres

〇 200–499 acres

〇 500–999 acres

〇 More than 1,000 acres

3. In the past 12 months, have you personally performed farm work?

〇 Yes

〇 No

4. When was the last year you personally performed farming activities?

〇 Farmed in the past 12 months

|__|__|__|__| Year

OR Skip to 9

〇 Never did farm work

5. In the past 12 months, what major income producing crops did you personally grow, excluding gardens for personal use? Mark all that apply:

〇 None

〇 Apples

〇 Alfalfa

〇 Barley

〇 Bermuda grass

〇 Blueberries

〇 Cabbage

〇 Christmas trees

〇 Corn, field

〇 Corn, pop

〇 Corn, seed

〇 Corn, sweet

〇 Cotton

〇 Cucumbers

〇 Grapes

〇 Hay or forage

〇 Melons

〇 Nursery crops

〇 Oats

〇 Peaches

〇 Peanuts

〇 Peppers

〇 Potatoes

〇 Pumpkins

〇 Rye

〇 Snap beans

〇 Sorghum

〇 Soybeans

〇 Strawberries

〇 Sweet potatoes

〇 Tomatoes

〇 Tobacco

〇 Wheat

〇 Other vegetables

〇 Other fruits

〇 Other crops

6. In the past 12 months, what poultry or livestock did you personally raise for sale?

Mark all that apply:

〇 None _ Skip to 9

〇 Beef cattle

〇 Dairy cattle

〇 Hogs/swine

〇 Poultry

〇 Poultry for eggs

〇 Sheep or goats

〇 Horses

〇 Other animals

7. In the past 12 months, how many livestock in total (cattle, hogs, sheep, goats, horses), did you personally raise for sale? Report the most livestock you had at any one time in the past 12 months.

〇 None

〇 Less than 50

〇 50–99

〇 100–499

〇 500–999

〇 1,000 or more

8. In the past 12 months, how many poultry did you personally raise for sale? Report the most poultry you had at any one time in the past 12 months.

〇 None

〇 Less than 50

〇 50–99

〇 100–499

〇 500–999

〇 1,000–10,000

〇 More than 10,000

9. The next questions are about your use of pesticides including herbicides, insecticides, fungicides, fumigants, or other chemicals used to kill plants, insects, fungi, molds, or rodents. Please do not include the use of antibiotics, sanitizers, antimicrobial soaps or fertilizers.

Have you ever personally mixed, loaded, or applied any pesticides for use on crops, animals, or any other purpose NOT including home and garden use?

〇 Yes

〇 No  Skip to 13

10. How many years in your lifetime did you personally mix, load, or apply pesticides?

|__|__|__| Years

11. How many days per year on average did you personally mix, load, or apply pesticides?

|__|__|__| Days per year

12. In the past 12 months, have you personally mixed, loaded, or applied pesticides?

〇 Yes

〇 No

13. Since you started farming, have you ever produced or grown any crops, vegetables, fruits, livestock, or poultry for sale without using conventional pesticides?

〇 Yes

Skip to 15

〇 Did not farm

〇 No

14. What percent (by acreage) of your current operation does not use conventional pesticides?

〇 None

〇 Less than 10%

〇 10 to 25%

〇 More than 25%

〇 Not currently farming

15. Do you currently have a job other than working on a farm? If you are retired, mark ‘No.’

〇 Yes

〇 No  Skip to 17

16. About how many years have you had this job?

〇 Less than 1 year

〇 1 to 5 years

〇 5 to 10 years

〇 10 to 20 years

〇 More than 20 years

17. What is your primary source of drinking water at your current home?

〇 Private well

〇 Spring

〇 Public or community supply

〇 Bottled water

〇 Rural water

18. How many years has this been your primary source of drinking water at your current house? Please round to the nearest year.

|__|__|__| Years

19. If you currently use a private well for drinking water, how deep is your private well ?

〇 Less than 50 feet

〇 50–100 feet

〇 101–150 feet

〇 More than 150 feet

〇 Don’t know

〇 Do not use a private well

20. What is your current marital status? Please choose the one response that best describes your situation.

〇 Single

〇 Married

〇 Living as married

〇 Divorced or separated

〇 Widowed

21. What is the highest year or level of school you completed?

〇 1. Less than high school degree

    〇 2. Completed high school or G.E.D.

〇 3. Some college but no degree

    〇 4. Associate or technical degree

    〇 5. Bachelor's degree

    〇 6. Master's degree

    〇 7. Doctoral degree

Tobacco and Alcohol

22. Have you smoked a total of 100 cigarettes or more during your lifetime?

〇 Yes

〇 No  Skip to 27

23. How old were you when you first started smoking cigarettes?

|__|__|__| Age

24. Do you currently smoke cigarettes?

〇 Yes  Skip to 26

〇 No

25. How old were you when you last smoked cigarettes?

|__|__|__| Age

26. Thinking about all the years that you smoked, about how many cigarettes per day did you usually smoke on days when you smoked?

|__|__|__| Cigarettes per day

27. Have you ever used chewing tobacco for 6 months or longer?

〇 Yes

〇 No  Skip to 31

28. How old were you when you first started using chewing tobacco?

|__|__|__| Age

29. How many total years did you use chewing tobacco?

Please round to the nearest year. If it was less than 1 year, enter ‘1’.

|__|__|__| Years

30. Do you currently use chewing tobacco?

〇 Yes

〇 No

31. Have you ever used snuff for 6 months or longer?

〇 Yes

〇 No  Skip to 35

32. How old were you when you first started using snuff?

|__|__|__| Age

33. For how many total years did you use snuff? Please round to the nearest year. If it was less than 1 year, enter ‘1’.

|__|__|__| Years

34. Do you currently use snuff?

〇 Yes

〇 No

35. 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 you ever drink any type of alcoholic beverage?

〇 Yes

〇 No  Skip to 40 (General Health), next page

36. How old were you when you last consumed an alcoholic beverage?

|__|__|__| Age

37. In the past 12 months, how often did you drink any type of alcoholic beverage?

〇 About every day

〇 3 to 5 days a week

〇 1 to 2 days a week

〇 2 to 3 days a month

〇 About once a month

〇 Less than once a month

〇 Never  Skip to 40 (General Health), next page

38. In the past 12 months, on days when you drank alcoholic beverages, how many drinks did you usually have?

〇 1 to 2

〇 3 to 5

〇 6 to 8

〇 9 to 11

〇 12 or more

39. In the past 12 months, how often have you had [4 or more (women) / 5 or more (men)] drinks on a single occasion?

〇 2 or more times per week

〇 About once a week

〇 2 to 3 times a month

〇 Once a month or less

〇 Never

General Health

40. What is your current height? Please answer in feet and inches, and round to the nearest inch.

|__| Feet |__|__| Inches

41. What is your current weight?

|__|__|__| Pounds

42. In the past three years, have you lost more than 5 pounds without intending to?

〇 Yes

〇 No  Skip to 44

43. In the past three years, how many pounds did you lose without intending to?

|__|__|__| Pounds

44. Has anyone in your immediate family related to you by blood (mother, father, sisters, brothers, or children) ever been diagnosed with asthma?

〇 Yes

〇 No

45. Has anyone in your immediate family related to you by blood (mother, father, sisters, brothers, or children) ever been diagnosed with Parkinson’s Disease?

〇 Yes

〇 No

46. Has anyone in your immediate family related to you by blood (mother, father, sisters, brothers, or children) ever had cancer?

〇 Yes

〇 No  Skip to 48

47. 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

48. Have you ever been diagnosed with or had cancer?

〇 Yes

〇 No  Skip to 50

49. 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

The next questions are about some common pain relievers.

50. Have you ever taken aspirin regularly (at least twice per week for 6 months or longer)?

〇 Yes

〇 No  Skip to 55

51. Do you currently take aspirin regularly (at least twice per week)?

〇 Yes

〇 No

52. How many years in total have you taken aspirin regularly (at least twice per week)?

〇 Less than 1 year
〇 1 to 5 years
〇 5 to 10 years
〇 10 to 15 years
〇 More than 15 years

53. When you took aspirin regularly, typically how many days per week did you take it?

〇 Every day
〇 5 to 6 days per week
〇 3 to 4 days per week
〇 1 to 2 days per week

54. Did you typically take baby aspirin or regular aspirin?

〇 Baby aspirin

〇 Regular aspirin

〇 Both

〇 Don’t know

55. The next questions are about the pain reliever ibuprofen. Common brand names include Motrin, Advil, and Nuprin.

Have you ever taken ibuprofen regularly (at least twice per week for 6 months or longer)?

〇 Yes

〇 No  Skip to 59

56. Do you currently take ibuprofen regularly (at least twice per week)?

〇 Yes

〇 No

57. How many years in total have you taken ibuprofen regularly (at least twice per week)?

〇 Less than 1 year
〇 1 to 5 years
〇 5 to 10 years
〇 10 to 15 years
〇 More than 15 years

58. When you took ibuprofen regularly, typically how many days per week did you take it?

〇 Every day
〇 5 to 6 days per week
〇 3 to 4 days per week
〇 1 to 2 days per week

59. Have you ever taken Tylenol or acetaminophen regularly (at least twice per week for 6 months or longer)?

〇 Yes

〇 No  Skip to 63

60. Do you currently take Tylenol or acetaminophen regularly (at least twice per week)?

〇 Yes

〇 No

61. How many years in total have you taken Tylenol or acetaminophen regularly (at least twice per week)?

〇 Less than 1 year
〇 1 to 5 years
〇 5 to 10 years
〇 10 to 15 years
〇 More than 15 years

62. When you took Tylenol or acetaminophen regularly, typically how many days per week did you take it?

〇 Every day
〇 5 to 6 days per week
〇 3 to 4 days per week
〇 1 to 2 days per week

63. About how long has it been since you last saw or talked to a doctor or other health care professional about your health? Would you say...

〇 Never

〇 Less than 1 year ago

〇 1 to 2 years ago

〇 2 to 5 years ago

〇 More than 5 years ago

64. MEN: When did you last have a PSA test (a blood test used to check men for prostate cancer) or a digital rectal exam to examine the prostate gland?

WOMEN: When did you last have a mammogram (an x-ray of each breast to look for breast cancer)?

〇 Never

〇 Less than 1 year ago

〇 1 to 2 years ago

〇 2 to 5 years ago

〇 More than 5 years ago

65. When did you last have a sigmoidoscopy or colonoscopy (exams in which a tube is inserted in the rectum to view the colon)?

〇 Never

〇 Less than 1 year ago

〇 1 to 2 years ago

〇 2 to 5 years ago

〇 More than 5 years ago

66. Have you ever taken any over-the-counter or prescribed medicines to help with bowel movements?  Do not include medications taken only a few times a year.

〇 Yes

〇 No

67. Typically, how often do you have bowel movements?

〇 Two or more times per day

〇 Once per day

〇 5 to 6 times per week

〇 3 to 4 times a week (about once every other day)

〇 Less than three times per week

Men go to Health Conditions on page 22.

Women go to Women’s Reproductive Health.

Women’s Reproductive Health

68. How many times have you been pregnant in your lifetime? Please include live births and stillbirths as well as any pregnancies that ended in a loss of pregnancy or abortion.

|__|__| Pregnancies

〇 None  Skip to 72

69. How many of your pregnancies ended in live birth or still birth?

|__|__| Births

〇 None  Skip to 72

70. How old were you the first time you had a pregnancy ending in a live birth or stillbirth?

|__|__| Age

71. How old were you the last time you had a live birth or stillbirth?

|__|__| Age

72. Have you ever had any of the following surgeries?

Mark an answer for each row below:	Yes	No
a. Hysterectomy (a surgical procedure to remove the uterus) without removing ovaries	〇	〇
b. Hysterectomy (a surgical procedure to remove the uterus) with removal of one or more ovaries	〇	〇
c. Separate surgery to remove one or both ovaries	〇	〇

73. Have you had a menstrual period in the past 12 months?

〇 Yes  Skip to 76

〇 No

FOR WOMEN WHO HAVE NOT HAD A PERIOD IN THE PAST 12 MONTHS:

74. Why did your periods stop? Please choose the one response that best describes your situation.

〇 My periods stopped on their own (naturally)

〇 My periods stopped after my uterus or ovaries were removed

〇 My periods stopped due to radiation or chemotherapy

〇 My periods stopped because I am using the kind of birth control that

eliminates periods

〇 My periods stopped because I am pregnant or breastfeeding

〇 My periods stopped for some other reason

75. How old were you when you had your last menstrual period?

|__|__| Age  Skip to 78

FOR WOMEN WHO HAVE HAD A PERIOD IN THE PAST 12 MONTHS:

76. What statement best describes you?

〇 My periods have not stopped and I am not taking

hormone replacement therapy

〇 My periods have not stopped but I am taking

hormone replacement therapy Skip to 78

〇 My periods stopped, but restarted when I began

hormone replacement therapy

〇 My periods stopped sometime in the last 12 months



77. IF PERIODS STOPPED IN PAST 12 MONTHS: Why did they stop sometime

in the last 12 months? Please choose the one response that best describes

your situation.

〇 My periods stopped on their own (naturally)

〇 My periods stopped after my uterus or ovaries were removed

〇 My periods stopped due to radiation or chemotherapy

〇 My periods stopped because I am using the kind of birth control that

eliminates periods

〇 My periods stopped because I am pregnant or breastfeeding

〇 My periods stopped for some other reason

78. Have you ever used estrogen or progesterone for hormone replacement therapy?

Common brand and generic names include Premarin, Estrace, estradiol, Provera, and medroxyprogesterone.

〇 Yes

〇 No  Skip to 83

79. How old were you when you first used prescribed hormone replacement therapy?

|__|__| Age

80. How many years altogether have you used prescribed hormone replacement therapy? Do not count years that you stopped. Please round to the nearest year. If the total amount of time you used them was less than 1 year, enter ‘1’.

|__|__|__| Years

81. Are you currently using prescribed hormone replacement therapy?

〇 Yes

〇 No

82. Was the prescribed hormone replacement that you took the most often...

〇 A combination of estrogen and progesterone

〇 Estrogen only

〇 Progesterone only

〇 Something else

〇 Don’t know

83. Have you ever taken birth control pills for any reason?

〇 Yes

〇 No  Skip to 86 (Health Conditions)

84. How old were you when you first took birth control pills?

|__|__| Age

85. How many years altogether did you take birth control pills? Do not count years that you stopped. Please round to the nearest year. If the total amount of time you used them was less than 1 year, enter ‘1’.

|__|__|__| Years

Health Conditions

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

Have you ever been diagnosed with Parkinson’s disease?

〇 Yes

〇 No  Skip to 91

87. How old were you when you were first diagnosed with Parkinson’s disease?

|__|__|__| Age

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

〇 Yes

〇 No

89. Do you currently 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 91

90. Did your symptoms ever improve after taking any of these medicines?

〇 Yes

〇 No

91. Have you ever been diagnosed with a heart attack (or myocardial infarction)?

〇 Yes

〇 No  Skip to 93

92. How old were you when you were first diagnosed with a heart attack (or myocardial infarction)?

|__|__|__| Age

93. Have you ever been diagnosed with depression?

〇 Yes

〇 No  Skip to 96

94. How old were you when you were first diagnosed with depression?

|__|__|__| Age

95. Are you currently taking any prescribed medicines for depression?

〇 Yes

〇 No

96. Have you ever been diagnosed with high blood pressure or hypertension? (WOMEN: Please do not count this condition if it occurred only during pregnancy.)

〇 Yes

〇 No  Skip to 99

97. How old were you when you were first diagnosed with high blood pressure or hypertension?

|__|__|__| Age

98. Do you currently take any prescribed medicines for high blood pressure or hypertension?

〇 Yes

〇 No

99. Have you ever been diagnosed with heart failure?

〇 Yes

〇 No  Skip to 101

100. How old were you when you were first diagnosed with heart failure?

|__|__|__| Age

101. Have you ever been diagnosed with a stroke? Do not include TIAs or mini-strokes.

〇 Yes

〇 No  Skip to 103

102. How old were you when you were first diagnosed with a stroke?

|__|__|__| Age

103. Have you ever been diagnosed with asthma?

〇 Yes

〇 No  Skip to 108

104. How old were you when you were first diagnosed with asthma?

|__|__|__| Age

105. Do you still have asthma?

〇 Yes  Skip to 107

〇 No

106. How old were you when your asthma stopped?

|__|__|__| Age

107. During the past 12 months, have you used any prescribed medicines for asthma, including an inhaler?

〇 Yes

〇 No

108. Have you ever been diagnosed with Farmer’s Lung?

〇 Yes

〇 No  Skip to 110

109. How old were you when you were first diagnosed with Farmer’s Lung?

|__|__|__| Age

110. Have you ever been diagnosed with idiopathic pulmonary fibrosis?

〇 Yes

〇 No  Skip to 112

111. How old were you when you were first diagnosed with idiopathic pulmonary fibrosis?

|__|__|__| Age

112. Have you ever been diagnosed with emphysema?

〇 Yes

〇 No  Skip to 114

113. How old were you when you were first diagnosed with emphysema?

|__|__|__| Age

114. Have you ever been diagnosed with chronic bronchitis?

〇 Yes

〇 No  Skip to 116

115. How old were you when you were first diagnosed with chronic bronchitis?

|__|__|__| Age

116. Have you ever been diagnosed with chronic obstructive pulmonary disease (COPD)?

〇 Yes

〇 No  Skip to 118

117. How old were you when you were first diagnosed with chronic obstructive pulmonary disease (COPD)?

|__|__|__| Age

118. Have you ever been diagnosed with diabetes (WOMEN: other than when pregnant)?

〇 Yes

〇 No  Skip to 122

119. How old were you when you were first diagnosed with diabetes?

|__|__|__| Age

120. Do you currently take any prescribed medicines for diabetes?

〇 Yes

〇 No  Skip to 122

121. Do you currently take insulin?

〇 Yes

〇 No

122. Have you ever been diagnosed with thyroid disease or thyroid problems?

〇 Yes

〇 No  Skip to 131

123. Have you ever been diagnosed with an overactive thyroid (hyperthyroidism)?

〇 Yes

〇 No  Skip to 127

124. How old were you when you were first diagnosed with an overactive thyroid?

|__|__|__| Age

125. 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

126. Do you currently take any prescribed medicines for an overactive thyroid?

〇 Yes

〇 No

127. Have you ever been diagnosed with an underactive thyroid (hypothyroidism)?

〇 Yes

〇 No  Skip to 131

128. How old were you when you were first diagnosed with an underactive thyroid (hypothyroidism)?

|__|__|__| Age

129. 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

130. Do you currently take any prescribed medicines for an underactive thyroid?

〇 Yes

〇 No

131. Have you ever been diagnosed with kidney stones?

〇 Yes

〇 No  Skip to 134

132. How old were you when you were first diagnosed with kidney stones?

|__|__|__| Age

133. How many times have you had kidney stones?

|__|__| Times

134. Have you ever been diagnosed with kidney disease? Do not include kidney stones.

〇 Yes

〇 No  Skip to 138

135. How old were you when you were first diagnosed with kidney disease?

|__|__|__| Age

136. Have you ever been treated with dialysis?

〇 Yes

〇 No  Skip to 138

137. How old were you when you were first treated with dialysis?

|__|__|__| Age

138. Have you ever been diagnosed with rheumatoid arthritis (an autoimmune disease)? Do not include osteoarthritis (the most common type of arthritis).

〇 Yes

〇 No  Skip to 143

139. How old were you when you were first diagnosed with rheumatoid arthritis?

|__|__|__| Age

140. Did you see a rheumatologist (a physician who specializes in bone, joint, and skin diseases) for rheumatoid arthritis?

〇 Yes

〇 No

141. Have you ever taken 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

142. Are you currently taking any of these medicines for rheumatoid arthritis?

〇 Yes

〇 No

143. Have you ever been diagnosed with lupus?

〇 Yes

〇 No  Skip to 148

144. How old were you when you were first diagnosed with lupus?

|__|__|__| Age

145. Did you see a rheumatologist (a physician who specializes in bone, joint, and skin diseases) for lupus?

〇 Yes

〇 No

146. Have you ever taken 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

147. Are you currently taking any of these medicines for lupus?

〇 Yes

〇 No

148. Have you ever been diagnosed with Sjögren’s disease?

〇 Yes

〇 No  Skip to 153

149. How old were you when you were first diagnosed with Sjögren’s disease?

|__|__|__| Age

150. Did you 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

151. Have you ever taken 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

152. Are you currently taking any of these medicines for Sjögren’s disease?

〇 Yes

〇 No

153. Have you ever been diagnosed with sarcoidosis?

〇 Yes

〇 No  Skip to 155

154. How old were you when you were first diagnosed with sarcoidosis?

|__|__|__| Age

155. Have you ever been diagnosed with pesticide poisoning?

〇 Yes

〇 No  Skip to 158

156. How old were you when you were first diagnosed with pesticide poisoning?

|__|__|__| Age

157. How many times have you been poisoned by pesticides?

|__|__| Times

158. Have you ever had a head injury requiring medical attention?

〇 Yes

〇 No  Skip to 162

159. Have you ever had a head injury that resulted in loss of consciousness (got knocked out)?

〇 Yes

〇 No  Skip to 162

160. How old were you the first time you lost consciousness from a head injury?

|__|__|__| Age

161. How many times have you had a head injury with loss of consciousness?

|__|__| Times

162. Have you ever had hay fever, seasonal allergies, or allergic rhinitis, whether or not it was diagnosed by a doctor?

〇 Yes

〇 No  Skip to 164

163. In the past 12 months, have you taken any prescribed or over-the-counter medicines for these allergies?

〇 Yes

〇 No

Stop for proxy – Placeholder

The next few questions ask about respiratory symptoms that you may have experienced in the past 12 months.

164. Do you usually cough during the day or at night, four or more days per week?

〇 Yes

〇 No  Skip to 167

165. Do you usually cough like this at least three months per year?

〇 Yes

〇 No

166. How many years have you had this cough?

|__|__|__| Years

167. Do you usually bring up phlegm when you cough? Don’t count phlegm from your nose as a result of seasonal allergies or colds.

〇 Yes

〇 No

168. During the past 12 months, about how many days of wheezing or whistling in your chest have you had?

〇 None

〇 1 to 2 days

〇 3 to 6 days

〇 7 to 12 days

〇 13 or more days

169. Are you troubled by shortness of breath when hurrying on level ground or walking up a slight hill or up a flight of stairs?

〇 Yes

〇 No

170. Do your hands shake or tremble?

〇 Yes

〇 No

171. Do your arms or legs shake?

〇 Yes

〇 No

172. Is your handwriting smaller than it once was?

〇 Yes

〇 No

173. Is your voice softer than it once was?

〇 Yes

〇 No

174. Do your feet shuffle when you walk?

〇 Yes

〇 No

175. Do you have trouble rising from a chair?

〇 Yes

〇 No

176. Do you suffer from a loss of sense of smell or a significantly decreased sense of smell?

〇 Yes

〇 No  Skip to 178

177. When did you start losing your sense of smell?

〇 Less than 1 year ago

〇 1 to 5 years ago

〇 5 to 10 years ago

〇 More than 10 years ago

〇 Don’t know

178. Have you ever been told, or suspected yourself, that you seem to “act out your dreams” while sleeping? For example, punching or flailing arms in the air, shouting, or screaming while asleep.

〇 Yes

〇 No  Skip to 181

179. When did you first “act out your dreams”?

〇 Less than 1 year ago

〇 1 to 5 years ago

〇 5 to 10 years ago

〇 More than 10 years ago

〇 Don’t know

180. How often have you “acted out your dreams”?

〇 Less than 3 times in your life

〇 Less than once a month

〇 1 to 3 times a month

〇 Once a week

〇 More than once per week

〇 Don’t know

181. Have you ever had joint swelling in your wrists, fingers, elbows, or knees lasting six or more weeks?

〇 Yes

〇 No

182. Have you ever had joint stiffness in the mornings, lasting at least 1 hour, for at least six weeks? Do not include stiffness that is related to or due to an injury or surgery.

〇 Yes

〇 No

183. Have you ever in your life had a period lasting two weeks or longer when most of the day you felt uninterested in things (like hobbies, work, or other things you usually enjoy) for most of the day?

〇 Yes

〇 No

184. Did you ever have a time in your life when you were a “worrier” – that is, when you worried a lot more about things than other people with the same problems as you?

〇 Yes

〇 No

185. Over the last two weeks, how often have you been bothered by... Mark an answer for each row below:	Not at all	Several days	More than half the days	Nearly every day
a. having little interest or pleasure in doing things	〇	〇	〇	〇
b. feeling down, depressed, or hopeless	〇	〇	〇	〇
c. having trouble falling or staying asleep, or sleeping too much	〇	〇	〇	〇
d. feeling tired or having little energy	〇	〇	〇	〇
e. feeling nervous, anxious, or on edge	〇	〇	〇	〇
f. not being able to stop or control worrying	〇	〇	〇	〇

186. How many hours of sleep do you get each night?

〇 Less than 6 hours

〇 6 hours to 6 hours and 59 minutes

〇 7 hours to 7 hours and 59 minutes

〇 8 hours to 8 hours and 59 minutes

〇 9 hours or more

187. How often do you feel sleepy most of the day?

〇 Never

〇 Less than one day per month

〇 1 to 3 days per month

〇 1 to 2 days per week

〇 3 to 5 days per week

〇 6 to 7 days per week

188. Do you nap during the day?

〇 Yes

〇 No  Skip to 190

189. How long do you nap?

〇 Less than 30 minutes

〇 30 minutes to 1 hour

〇 More than 1 hour

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

Month Day Year

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 review the phone number(s) we have for you and make any corrections or updates in the space 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. Do you have access to a computer?

〇 1. No  Please skip to question 4

〇 2. Yes

3. If you use this computer to get on the internet, do you use dial-up, high speed internet access or something in between?

〇 1. Dial-up (get to the internet through a telephone line)

〇 2. High speed internet access

〇 3. Something in between

〇 4. Other

4. Our records indicate that your current address is:

XXXXXXXXXX

XXXXXXXXXX

XXXXXXXXXX

Is this correct? □ No  Please enter corrections in the space provided below

□ Yes  Skip to question 5

Address 1

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

Address 2

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

City State Zip Code

5. What year did you move into your current address? |__|__|__|__|

Year

<If Participant or Assisted Participant, GO TO Q6; If Proxy, GO TO Q7>

6. In case we are unable to reach you, please list the name and contact information for two people who do not live with you but will know how to reach you in case you move. It is best to give the name of someone who is about your age or younger.

Person 1:

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

First name

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

Last name

Relationship to you: ___________________________________________________________

Phone Numbers:

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

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

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

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

Address:

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

Address 1

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

Address 2

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

City State Zip Code

Person 2:

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

First name

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

Last name

Relationship to you: ___________________________________________________________

Phone Numbers:

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

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

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

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

Address:

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

Address 1

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

Address 2

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

City State Zip Code

If you are the Agricultural Health Study, participant and you completed this questionnaire yourself or with help from another person, then you have finished answering all of the questions we have for you at this time! Thank you very much for your valuable contribution to this important research.

If you filled this out for the person whose name is on the front cover of this survey, we have just a few more questions we need answered that will help us better understand the responses you gave us about the Agricultural Health Study participant.

<Female participant surveys use ‘she/She’; Male participant surveys, use ‘he/He’>

7. Why did [he / she] not actively take part in answering the questions? [He / She] is…

〇 1. Not capable of answering the questions

〇 2. Incapacitated

〇 3. Deceased

〇 4. Currently hospitalized

〇 5. Other

8. 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

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

|__|__|__| # Years

9a. For our records, please write your name and phone number below:

First Name Last Name

9b. Phone Number

9c. Is this phone number your home, work, cell, or some other number?

〇 1. Home

〇 2. Work

〇 3. Cell

〇 4. Other

10. Lastly, we are interested in hearing about what you would like to gain from the Agricultural Health Study. What findings are you interested in learning about from this study?

__________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Those are all of the questions we have for you at this time! Thank you very much for your valuable contribution to this important research.

1