1. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn1 Washington Group on Disability Statistics: extended sets Marijke W. de Kleijn – de Vrankrijker WHO-FIC Collaborating Centre The Netherlands

2. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn2 Outline Objectives of WG and task of group 3 Purpose of short set and extended sets Content of extended set 1 and 2 related to short set Content of proposed set 1 Testing questions related to proposed set 1 Content of extended set 2

3. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn3 WG objectives Develop a small set/s of general disability measures Recommend extended set/s of items to measure disability as components of population surveys Address methodological issues associated with disability measurement

4. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn4 Purpose short set Purpose for international comparability of disability measures/data Highest priority given to assessing equalization of opportunities Partially fulfills purpose of monitoring limitations in functioning in the population

5. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn5 Purpose extended sets Should be same as short set International comparability –Equalization of opportunities –Monitoring functioning and disability in population This means inclusion of all ICF components –Body function/structure, impairments –Activity, limitations –Participation, restrictions –Environmental factors, barriers/facilitators

6. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn6 Short set Response categories: No, some, a lot, cannot do at all 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 steps? 4)Do you have difficulty remembering or concentrating? 5)Do you have difficulty with (self-care such as) washing all over or dressing? 6)Because of a physical, mental, or emotional health condition, do you have difficulty communicating (for example understanding others or others understanding you?

7. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn7 Content of extended sets Bangkok meeting: Set 1: –functions and basic activities –related to current 6 domains of short set + additional functions and basic activities Set 2: –other activities, –participation and –environment

8. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn8 Short sets vs extended sets ICF component Short set Extended set 1 Extended set 2 Short set 2? Body function ++-- Body structure +? -- Activity+/- Partici- pation --++ Environmen tal factors --++

9. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn9 Testing of short set Use of extended set(s) Recommended to use existing instruments = first extended set?

10. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn10 First extended set First proposal to group 3: WHS-8 WHO-DAS-12

11. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn11 First extended set After comments from group members, proposal: WHS-17 WHO-DAS-12 Speech question Total 30 questions

12. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn12 WHS-17 items Sleep Feeling sad Anxiety Seeing/recognizing a person Seeing/recognizing object, reading Hearing someone Hearing conversation Aches/pain Bodily discomfort

13. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn13 WHS-17 items (2) Shortness of breath at rest Shortness of breath mild exercise Coughing Appearance deformed Skin defects Defecation Urinating Using hands/fingers

14. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn14 WHO-DAS-12 Concentrating doing Emotially affected Learning new tasks Standing Walking long distance Washing whole body

15. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn15 WHO-DAS-12 items (2) Getting dressed Household responsibilities Dealing with people Friendship Day-to-day activities (work/school) Community activities

16. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn16 UNESCAP pilot studies Pilot studies UNESCAP region We have to use the experiences from those pilots Questionnaire including : –WG short set –WHS-17 –WHO-DAS-36 –4 questions on met/unmet needs for assistance

17. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn17 Testing short set Group 2 selected questions for testing the short set from: WHS WHO-DAS SF-36 mental component Total 27 questions

18. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn18 Items mapped to ICF Short set WHS-8 WHS-17 WHO-DAS-12 Eurostat health module Test questions Mapped to ICF see matrix

19. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn19 Second extended set Based on analysis of existing national survey questionnaires Common questions/areas and missing areas compared to ICF Next presentation Margie Schneider and Marijke de Kleijn

20. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn20 Testing general set Testing general set 2005 Including extended questions (which?)

21. National Institute for Public Health and the Environment WG 5 Rio September 2005 Marijke de Kleijn21 Dank voor uw aandacht Marijke.de.kleijn@rivm.nl www.rivm.nl/who-fic