Report on the Budapest Initiative* *Joint UNECE/WHO/Eurostat Task Force on Measurement of Health Status Jennifer H. Madans National Center for Health Statistics, USA 6 th Annual Meeting of the Washington Group Kampala, Uganda, October 10-13, 2006

The Budapest Initiative Goals: To develop a new common instrument to measure health state. To coordinate with existing groups such as the Eurostat Group on EHIS and the Washington Group. Meetings: May November 2005 Products: Domain structure Draft question set Followup: Creation of a Working Group to incorporate the Task Force’s comments, develop a revised set of questions for consideration, and develop a test protocol.

Health Status and Health States Health states (capacities) Determinants of health Genetic contribution Lifestyle/behaviour Death Physical environment Physiological risk factors and risk markers Diseases, symptoms and injuries Domain 1 Domain2 N2.... HEALTH STATUS DomainN1 Economic environment Social environment Physiological risk factors and risk markers Quality of life Wellbeing Health State: an individual’s levels of functioning within a set of health domains.

Final List of Recommended Domains Vision Hearing Mobility Cognition Affect Pain or discomfort Fatigue Social Relationships

Conceptual and Logistic Issues for Item Construction and Domain Questions Number of questions per domain Dimensionality Duration of the recall period Dealing with assistive devices and medications Item wording and response categories

Conceptual and Logistic Issues for Item Construction and Domain Questions Outstanding Issues Measure capacity or performance? Include use of assistive devices or not? Response categories: none, mild, moderate, severe, extreme – or – a little, some, a lot, unable? Include social relationships as a final domain? Should mobility domain ask about “moving around” or “walking and stair climbing”?

Proposed Questions for Testing Vision “Do you wear glasses or contacts?” If yes: “Please answer the following question according to your normal use of glasses or contacts.” “Overall, during the past four weeks, how much difficulty did you have….” in recognizing the face of someone four meters away (for example, across a road)? in seeing printed text (for example, in a newspaper or book)?

Proposed Questions for Testing Hearing “Do you wear a hearing aid?” If yes: “Please answer the following question according to your normal use of [a] hearing aid(s).” “Overall, during the past four weeks, how much difficulty did you have….” in hearing the other person when [you/he/she] were having one-on-one conversations? in hearing what was said in conversations with multiple people?

Proposed Questions for Testing Mobility “Do you use any aids or specialized equipment for [moving around/walking]?” If yes: “Which of the following types of aids or specialized equipment do you use for [moving around/walking]?” cane or walking stick walker wheelchair other (interviewer record)

Proposed Questions for Testing Mobility If yes: “Please answer the following question without the use of your aids or specialized equipment.” “Overall, during the past four weeks, how much difficulty did you have….” in moving around? or with walking short distances (for example, 100 meters)? with walking long distances (for example, 500 meters)? with walking up or down stairs? or with walking?

Proposed Questions for Testing Cognition “Overall, during the past four weeks, how much difficulty did you have….” with concentrating or remembering things? with thinking clearly and solving daily problems?

Proposed Questions for Testing “Overall, during the past four weeks, ….” Affect how sad, low or depressed did you feel? how worried, nervous, or anxious did you feel? Fatigue how much of a problem did you have with feeling tired or fatigued?

Proposed Questions for Testing Pain or Discomfort “Overall, during the past four weeks, ….” how much bodily pain or discomfort did you have? If asked: “When answering, please consider both the times you were taking medication and the times you were not and try to come up with an overall or average rating.”

Proposed Questions for Testing Social Relationships “Generally speaking, how much difficulty do you have….” in creating or maintaining social relationships?

The Testing Protocol Standard protocol used at each site Structured questions administered to respondents Questions asked twice Open-ended Response sets (split sample) Unstructured probes for interviewers How do respondents interpret the question, choose a response, and do they adhere to the recall period?

Relationship with Washington Group Work Overlapping domains Same conceptual issues Different contexts Different approaches

Next Steps… October 2006 – November 2006: Finalize testing protocol Conduct tests (Italy, USA, Canada) December 2006 – January 2007: Write and review final test reports February 2007: Make recommendations to European Statistical System