Developing a protocol: Methodological Challenges

1. Developing a protocol: Methodological Challenges 2nd International Congress of IASSID-Europe Maastricht, the Netherlands 2-5 August 2006

2. Developing a protocol: Methodological Challenges • Marja Veenstra marja.veenstra@hag.unimaas.nl Care and Public Health Research Institute, Dept of General Practice, UM,the Netherlands • Henny van Schrojenstein Lantman- de Valk Care and Public Health Research Institute, Dept of General Practice UM,Pepijn and Paulus Centre Echt, Governor Kremers Centre Maastricht, the Netherlands • Bernard Azema C.R.E.A.I. Languedoc Roussillon (Centre Régional pour les Enfants et les Adultes Inadaptés), France • Alexandra Carmen Cara Sc Medfam Apolo Srl, Romania • Tuomo Maatta Social Welfare/Service Centre of Kuusanmäki, The Joint Municipial Authority For Specialised Health Care And Social Welfare In Kainuu, Finland

3. Contents • Operationalising indicators • Data on 2 levels • Comparability of data • Health interview • Challenges • Translation • Same procedure in each country

4. Aim • “To operationalise the final set of health indicators for people with intellectual dissabilities so as to compare health data of people with ID with those of the general population within and amongst the 14 participating EU countries.”

5. Demographic Prevalence Living arrangements Daily Occupation Income/status Life Expectancy Health Status Epilepsy Oral health Mental Health Sensory Mobility BMI Determinants Physical activity Challenging behaviour Psychotropic medication use Health Systems Hospitalisation, contact with health care professionals Health check Health promotion Specific training for physicians Pomona: Final set of 18 indicators

6. Procedure operationalising indicators • All partner meeting in Rome • 3 smaller regional meetings • Barcelona • Graz • Ljubljana

7. II Data collection on 2 levels • On organisational level • publications, national registrations, consultation of experts • On individual level • people with ID and parents/carers

8. On organisational levelin memberstate report • Prevalence of people with ID • Life expectancy • Health services • Health promotion • Specific training for physicians • Income (minimum wage, social benefits, pension)

9. II Comparability of health data • General population • Items from generic health surveys • Standardized, validated and reliable scales • Within people with ID between countries • Characteristic problems: standardized disability scales

10. III Individual health interview • No assessment • Operationalise indicators in line with existing questions for general population

11. Decisions • No open questions, only medication • Protocol and code book for partners to guarantee same procedure • Spss-file and excel-file (coding)

12. Survey consisting of 3 parts • Part 1: Items from various sources • Part 2: Pas ADD Checklist • Part 3: the Aberrant Behaviour Checklist

13. Procedure • Questionnaire sent in advance of the interview • One part filled in in advance by a person who knows the person with ID • Second part of questionnaire filled in together with interviewer

14. Challenges • In all countries the same questionnaire and same procedure. • Language, survey developed in English

15. Translation • Procedure • English into 13 languages in each country • Step 1: researcher compares English version with translated version • Step 2: colleague working infield ID, conceptual equivalence • Step 3: colleague translates the English version into own language • Step 4: compare step 1, 2, and 3

16. What did we learn • Health interview most adequate way of data collecting • Derive questions from general population surveys to maximize validity and reliability • Feedback important from partners, especially about differences between countries • Pilot will be practical test of feasibility