1. Analyses of extended set questions using the U.S. National Health Interview Survey Mitchell Loeb / Jennifer Madans National Center for Health Statistics/ Washington Group on Disability Statistics

2. The NHIS is a cross-sectional household survey of the civilian, non-institutionalized population of the United States, conducted annually by NCHS since 1957. Data are collected in person from a sample based on a multistage probability design. Annually, the sample comprises approximately 35,000 households containing about 87,500 persons per year National Health Interview Survey

3. WG short set of questions: Because of a Health problem: 1)Do you have difficulty seeing even if wearing glasses? 2)Do you have difficulty hearing even if using a hearing aid? 3)Do you have difficulty walking or climbing stairs? 4)Do you have difficulty remembering or concentrating? 5)Do you have difficulty with (self-care such as) washing all over or dressing? 6)Using your usual language, do you have difficulty communicating (for example understanding or being understood by others)? Response categories: No - no difficulty; Yes - some difficulty; Yes - a lot of difficulty; Cannot do at all

4. WG Recommendation: For purposes of reporting and generating internationally comparable data, the WG has recommended the following cutoff be used to define the population of persons with disabilities: The sub-population disabled includes everyone with at least one domain that is coded as a lot of difficulty or cannot do it at all.

5. Rational for Extended Set Questions: 1)To include additional domains that were not included in the Short Set (upper body functioning, affect, pain, and fatigue) 2)To include more information per domain (for example, use of assistive devices/aids, and functioning with and without assistance) 3)To develop a single measure, per domain, for un-accommodated functioning 4)To use the additional information per domain to develop a continuum of functioning that would supplement the Short Set

7. What are the challenges going from a single question per domain to multiple questions per domain? 1.The need to determine the ‘added value’ of multiple questions. 2.The need to be able to combine multiple indicators to form a continuum of functional difficulty. Going from SS to Extended set

8. 1.Do you have difficulty seeing, even when wearing glasses? (SS) Initial analyses using proposed extended set questions (difficulty with near and far vision) did not create a continuum of functioning, so the questions were not included in the Extended set. Vision: Extended set/Short set question

9. Do you have difficulty seeing, even when wearing glasses? SS (NHIS 2011) Unweighted Frequency Weighted Percent Valid Percent No difficulty 1431287.889.2 Some difficulty 17119.49.5 A lot of difficulty 2081.1 Cannot do 320.1 Subtotal 1626398.4100.0 Refused/NA/DK 2771.6 Total 16540100.0

10. 1.Using your usual language, do you have difficulty communicating, for example, understanding or being understood? (SS) Communication: Extended set/Short set question

11. Using your usual language, do you have difficulty communicating, for example, understanding or being understood? SS (NHIS 2011) Unweighted Frequency Weighted Percent Valid Percent No difficulty 1541893.895.2 Some difficulty 7003.94.0 A lot of difficulty 1100.6 Cannot do 280.10.2 Subtotal 1625698.4100.0 Refused/NA/DK 2841.5 Total 16540100.0

12. 1.Do you have difficulty hearing, even when using a hearing aid? (SS) 2.Do you have difficulty hearing what is said in a conversation with one other person in a quiet room [even when wearing your hearing aid(s)]? 3.Do you have difficulty hearing what is said in a conversation with one other person in a noisier room [even when wearing your hearing aid(s)]? Analyses were conducted on Q2 and Q3. Hearing: Extended set questions

13. Do you have difficulty hearing, even when using a hearing aid? SS (NHIS 2011) Unweighted Frequency Weighted Percent Valid Percent No difficulty 1426887.287.7 Some difficulty 16909.610.4 A lot of difficulty 2791.61.7 Cannot do 250.10.2 Subtotal 1626298.4100.0 Refused/NA/DK 2781.6 Total 16540100.0

14. Difficulty hearing in a noisy room by quiet room (NHIS 2011) Noisy room Quiet room No difficulty Some difficulty A lot of difficulty Cannot doTotal No difficulty 118122867179614864 Some difficulty 123714338111186 A lot of difficulty 11110722141 Cannot do 00025 Total 1193635926246416216

15. Hearing Indicator Unweighted Frequency Weighted Percent 1: low difficulty 14679 91.5 2 1016 5.5 3 356 2.1 4: high difficulty 165 0.9 Total16216100.0

16. Unweighted Count Weighted Row % Hearing Indicator Difficulty hearing (SS) 1234Total No difficulty1365848752714231 96.53.10.30.0 Some difficulty952471228281679 59.925.513.31.3 A lot of difficulty355675105271 15.518.030.835.7 Cannot do at all00025 0.0 100.0 Total14672101435516516206 91.65.52.130.9 Hearing Indicator by WG-SS Question

17. Employment status last week (2010) Unweighted Count Weighted Column % Hearing Indicator 1234Total not working 215624395462540 35.854.668.289.438.1 working 34141623983623 64.245.431.810.661.9

18. 1.Do you have difficulty remembering or concentrating? (SS) 2.Do you have difficulty remembering, concentrating, or both? 3.How often do you have difficulty remembering? (Frequency) 4.Do you have difficulty remembering a few things, a lot of things, or almost everything? (Intensity) Analyses conducted on Q2, Q3 and Q4 Cognition: Extended set questions

19. Do you have difficulty remembering or concentrating? SS (NHIS 2010) Unweighted Frequency Weighted Percent Valid Percent No difficulty 515276.683.6 Some difficulty 91513.514.8 A lot of difficulty 1011.41.6 Cannot do 30.0 Subtotal 617191.2100.0 Refused/NA/DK 6048.8 Total 6775100.0

20. Difficulty remembering: Intensity by Frequency (NHIS 2010) (see Handout) How much you have difficulty remembering (Intensity) How often do you have difficulty remembering (Frequency) a few things a lot of things almost everything Total sometimes620348662 often896612167 all of the time9223566 Total71812255895

21. Remembering Indicator Unweighted Frequency Weighted Percent 1: low difficulty 515283.7 2 6209.8 3 1892.9 4: high difficulty 861.3 5: Concentrating only*1162.2 Total6163100.0

22. Which of the following, if any, describe your difficulty remembering? I forget things because I am busy and have too much to remember. My difficulty is getting worse. My difficulty has put me or my family in danger. I forget only little or inconsequential things. I must write down important things, such as my address or when to take medicine, so that I do not forget. My family members or friends are worried about my difficulty remembering. My difficulty is normal for someone my age. 2010 NHIS Probe Questions:

23. Remembering Indicator by Probes Weighted Column percentRemembering Indicator PROBES 2.003.004.00 1. Busy/too much to remember 65.747.836.1 2. Difficulty is getting worse20.242.368.5 3. Difficulty is putting me/my family in danger 1.46.49.6 4. Only forget little things77.656.433.0 5. Must write down important things so I don’t forget 15.036.647.5 6. Family members worried about my difficulty remembering 7.230.752.9 7. Difficulty is normal for my age76.446.617.5

24. Effect of adding difficulty concentrating *116 individuals with ‘concentrating only’ were allocated as follows: 1.112 with a little difficulty on the SS question were classified as 2 2.4 with a lot of difficulty on the SS question were classified as 3 Those with both remembering and concentrating difficulty were upgraded 7 individuals from 2 to 3, and 40 individuals from 3 to 4

25. Cognition Indicator Unweighted Frequency Weighted Percent 1: low difficulty 515283.7 2 72511.9 3 1602.4 4: high difficulty 1262.0 Total6163100.0

26. ADL/IADL (2010) Unweighted Count Weighted Column % Cognition Indicator 1234Total Needs help with personal care 54351627132 0.85.08.120.61.8 Needs help with routine needs 130742849281 2.18.913.336.73.8

27. Employment status last week (2010) Unweighted Count Weighted Column % Cognition Indicator 1234Total not working 1926360103982487 34.853.262.475.638.1 working 322525353283559 65.246.837.624.461.9

28. 1.In the past 3 months, how often did you have pain? (Intensity) 2.Thinking about the last time you had pain, how much pain did you have? (Frequency) Pain: Extended set questions

29. Pain Intensity by Frequency of pain in past 3 months Frequency of pain in past 3 months Pain Intensity Never Some days Most days Every day Total not asked 2631000 a little014421331121687 in between 06112132751099 a lot0220139314673 Total263122734857016090

30. Pain Indicator Unweighted Frequency Weighted Percent 1: low level407366.4 285615.2 370811.5 4: high level4537.0 Total609022.4

31. Which of the following, if any, describe your pain? It is constantly present. Sometimes I’m in a lot of pain and sometimes it’s not so bad. Sometimes it’s unbearable and excruciating. When I get my mind on other things, I am not aware of the pain. Medication can take my pain away completely. My pain is because of work. My pain is because of exercise. 2010 NHIS Probe Questions:

32. Unweighted Count Weighted Column % Pain Indicator Pain Probe Questions 1234 Total 1. Pain is constantly present942213873711073 6.827.655.583.5 2. Sometimes pain is unbearable/excruciating63144312346865 3.917.444.678.4 3. When I get my mind on other things,7554673021341658 I am not aware of the pain54.455.642.927.7 4. Medication can take my pain away completely7333792371171466 53.445.732.223.6 5. My pain is because of work25914611265582 18.919.016.315.0 6. My pain is because of exercise2761247120491 21.415.611.04.3 Pain Indicator by Probe Questions

33. Employment status last week (2010) Unweighted Count Weighted Column % Pain Indicator 1234Total not working 1484369342322507 34.038.444.666.438.1 working 25884873661413582 66.061.655.433.661.9

34. 1.In the past 3 months, how often did you feel very tired or exhausted? (Frequency) 2.Thinking about the last time you felt very tired or exhausted, how long did it last? (Duration) 3.Thinking about the last time you felt this way, how would you describe the level of tiredness? (Intensity) Fatigue: Extended set questions

35. How long it lasted by How often felt very tired by Level of tiredness (Handout) Level of tiredness: Intensity How long it lasted: Duration How often felt very tired: Frequency NeverSome daysMost daysEvery dayTotal not asked 2377 a littleSome of the day144867301545 Most of the day109215135 All of the day 165324 In betweenSome of the day6778219778 Most of the day1837519277 All of the day 63201699 a lotSome of the day2474929325 Most of the day16011543318 All of the day923956187 Total 237729954732206065

36. Fatigue Indicator Unweighted Frequency Weighted Percent 1: low level 382561.9 2 103418.0 3 83914.2 4: high level 3675.8 Total6065100.0

37. Is your tiredness the result of any of the following? Too much work or exercise? Not getting enough sleep? A physical or health-related problem? Something else? 2010 NHIS Probe Questions:

38. Fatigue Indicator by Probes Unweighted Count Weighted Column % Fatigue Indicator Fatigue Probe Questions 1234 Total 1. A physical or health-related problem290340 2491219 18.331.538.369.3 2. Fatigue results from stress53445138186 1.44.15.48.3 3. too much work or exercise7055123941031714 49.851.150.229.8 4. not getting enough sleep6866035322002021 49.361.766.453.6

39. Employment status last week (2010) Unweighted Count Weighted Column % Fatigue Indicator 1234Total not working 15863883232012498 38.534.335.252.838.1 working 22386465161663566 61.565.764.847.261.9

40. 1.How often do you feel worried, nervous or anxious? (Frequency) 2.Thinking about the last time you felt worried, nervous or anxious, how would you describe the level of these feelings? (Intensity) 3.Do you take medication for these feelings? Anxiety: Extended set questions

41. Challenge to combining the questions into a single anxiety indicator Medication variable: what did taking medication for anxiety mean? Should everyone reporting medication use be considered anxious? Medication is an accommodation. (Prevalence of taking medication is 9.2%)

42. Frequency of Anxiety by Anxiety Intensity and Use of Meds Take meds for these feelings Level of feeling last time: Intensity How often feel worried/nervous/anxious: Frequency DailyWeeklyMonthly A few times a year NeverTotal YesA little4557343616188 In between668034 4218 A lot92337106148 NoNot asked00002449 A little13428137300788 In between10319113800432 A lot84632000167 Total 5247056068024754390

43. Anxiety Indicator Unweighted Frequency Weighted Percent 1: low level 244955.5 2 53112.2 3 4159.4 4: high level 99522.9 Total4390100.0

44. Which of the following statements, if any, describe your feelings of being worried, nervous, or anxious? My feelings are caused by the type and amount of work I do. Sometimes the feelings can be so intense that my chest hurts and I have trouble breathing. These are positive feelings that help me to accomplish goals and be productive. * The feelings sometimes interfere with my life, and I wish that I did not have them. * 2010 NHIS Probe Questions:

45. Which of the following statements, if any, describe your feelings of being worried, nervous, or anxious? If I had more money or a better job, I would not have these feelings. Everybody has these feelings. They are part of life and are normal. I have been told by a medical professional that I have anxiety. 2010 NHIS Probe Questions:

46. Probe questions Asked only of persons who reported daily, weekly or monthly anxiety or who reported taking medication for anxiety

47. Anxiety Indicator by Probes Unweighted Count Weighted Column % Anxiety Indicator Anxiety Probe Questions 1234 Total Sometimes feelings so intense my chest hurts and have trouble breathing 2833218279 6.26.821.1 Feelings interfere with life 112150634896 23.236.065.4 Told by medical professional that I have anxiety 4553484582 9.210.648.9 Supplementary NHIS questions K6 Score: Serious Psychological Distress 181318176225 0.51.83.316.7 Unable to participate in social activities 4010982141 1.31.01.87.4

48. Employment status last week (2010) Unweighted Count Weighted Column % Anxiety Indicator 1234Total not working 10171961545201887 38.335.832.947.639.6 working 14313352614752502 61.764.267.152.460.4

49. 1.How often do you feel depressed? (Frequency) 2.Thinking about the last time you felt depressed, how depressed did you feel? (Intensity) 3.Do you take medication for depression? Depression: Extended set questions

50. Challenge to combining the questions into a single depression indicator Medication variable: what did taking medication for depression mean? Should everyone reporting medication use be considered depressed? Medication is an accommodation. (Prevalence of taking medication is 8.5%)

51. Frequency of Depression by Depression Intensity and Use of Meds Take meds for these feelings Level of feeling last time: Intensity How often feel depressed: Frequency DailyWeeklyMonthly A few times a year NeverTotal YesA little2539425918183 In between424345465181 A lot843412226158 NoNot asked0003506 A little41982000339 In between3076890195 A lot4943380130 Total 27133342612735354692

52. Depression Indicator Unweighted Frequency Weighted Percent 1: low level 350675.4 2 3277.2 3 1392.5 4: high level 72014.8 Total4692100.0

53. Which of the following statements, if any, describe your feelings of being depressed? My feelings are caused by the death of a loved one. Sometimes the feelings can be so intense that I cannot get out of bed. The feelings sometimes interfere with my life, and I wish that I did not have them. * 2010 NHIS Probe Questions:

54. Which of the following statements, if any, describe your feelings of being depressed? If I had more money or a better job, I would not have these feelings. Everybody has these feelings. They are part of life and are normal. I have been told by a medical professional that I have depression. 2010 NHIS Probe Questions:

55. Probe questions Asked only of persons who reported daily, weekly or monthly depression or who reported taking medication for depression

56. Depression Indicator by Probes Unweighted Count Weighted Column % Depression Indicator Depression Probe Questions 1234 Total Sometimes feelings so intense I can’t get out of bed 2814185227 7.212.026.6 Feelings interfere with life 12967466662 38.952.766.5 Told by medical professional that I have depression 4429505578 14.725.557.8 Supplementary NHIS questions K6 Score: Serious Psychological Distress 241621155216 0.65.320.619.5 Unable to participate in social activities 4871566136 1.12.211.77.9

57. Employment status last week (2010) Unweighted Count Weighted Column % Depression Indicator 1234Total not working 1352124764251977 35.933.348.255.138.9 working 2153203632952714 64.166.751.844.961.1

58. SS Do you have any difficulty walking or climbing steps? 1.Do you have difficulty walking 100 yards on level ground, that would be about the length of one football field or one city block [without the use of your aid]? 2.Do you have difficulty walking a third of a mile on level ground, that would be about the length of five football fields or five city blocks [without the use of your aid]? 3. Do you have difficulty walking up or down 12 steps [without the use of your aid]? Analyses conducted on Q2, Q3 and Q4 Mobility: Extended set questions

59. Do you have difficulty walking or climbing steps? SS (NHIS 2010) Unweighted Frequency Weighted Percent Valid Percent No difficulty 498575.782.8 Some difficulty 75810.411.4 A lot of difficulty 3254.04.4 Cannot do 1141.31.4 Subtotal 618291.4100.0 Refused/NA/DK 5938.6 Total 6775100.0

60. Difficulty walking 1/3 mile by difficulty walking 100 yards (NHIS 2010) Difficulty walking 100 yards Difficulty walking 1/3 mile No difficulty Some difficulty A lot of difficulty Cannot doTotal No difficulty 481234828145202 Some difficulty 3825213260482 A lot of difficulty 1710783198 Cannot do (184) 00000 Total 48516072671575882

61. Walking Indicator Unweighted Frequency Weighted Percent 1: low difficulty 516086.8 2 3185.0 3 1542.2 4: high difficulty 4346.0 Total6066100.0

62. Adding difficulty with ‘steps’ Amount of difficulty walking up or down 12 steps Walking Indicator Not at allA littleA lotCompletely Don't knowTotal 1487925015795160 21141772430318 345733060154 4411031541360434 507960322315296066

63. Mobility Indicator Unweighted Frequency Weighted Percent 1: low difficulty 513886.5 2 3064.8 3 1852.6 4: high difficulty 4376.1 Total6066100.0

64. ADL/IADL (2010) Unweighted Count Weighted Column % Mobility Indicator 1234Total Needs help with personal care 177115893 0.41.44.314.41.4 Needs help with routine needs 531829137237 1.04.516.230.13.3

65. Employment status last week (2010) Unweighted Count Weighted Column % Mobility Indicator 1234Total not working 17451961423762459 32.157.476.485.237.7 working 339211043613606 67.942.623.614.862.3

66. 1.Do you have difficulty with self-care, such as washing all over or dressing? SS 2.Do you have difficulty raising a 2 liter bottle of water or soda from waist to eye level? 3.Do you have difficulty using your hands and fingers, such as picking up small objects, for example, a button or pencil, or opening or closing containers or bottles? Note: Q2 & Q3 are used for the upper body indicator. Q1 remains the self-care indicator. Upper body: Extended set questions

67. Do you have difficulty with self-care, such as washing all over or dressing? SS (NHIS 2010) Unweighted Frequency Weighted Percent Valid Percent No difficulty 593788.396.8 Some difficulty 1752.22.4 A lot of difficulty 370.50.6 Cannot do 190.2 Subtotal 616891.2100.0 Refused/NA/DK 6078.8 Total 6775100.0

68. Difficulty lifting 2 liter bottle by difficulty using hands/fingers (NHIS 2010) Amount of difficulty using hands/ fingers Amount of difficulty raising 2 liter bottle No difficulty Some difficulty A lot of difficultyCannot doTotal No difficulty 552312318105674 Some difficulty 281106184409 A lot of difficulty 3013 763 Cannot do 323816 Total 583724452296162

69. Upper body Indicator Unweighted Frequency Weighted Percent 1: low difficulty 552390.3 2 5107.9 3 921.4 4: high difficulty 370.4 Total6162100.0

70. ADL/IADL (2010) Unweighted Count Weighted Column % Upper body Indicator 1234Total Needs help with personal care 41502715133 0.69.234.035.01.9 Needs help with routine needs 132993416281 2.016.740.034.53.8

71. Employment status last week (2010) Unweighted Count Weighted Column % Upper body Indicator 1234Total not working 206736478322541 34.767.979.291.438.2 working 34551461453620 65.332.120.88.661.8