Applying a set of Health Indicators for People with Intellectual Disabilities across 14 European Countries: Implementing

1. Applying a set of Health Indicators for People with Intellectual Disabilities across 14 European Countries: Implementing a Pilot Study Jonathan Perry & Mike Kerr Welsh Centre for Learning Disabilities Cardiff University

2. What is a pilot study? • Mini version of a full-scale study (van Teijlingen & Hundley, 2001) • AKA ‘feasibility' study • Pilot studies are a crucial element of a good study design. • "underdiscussed, underused and underreported" (Prescott and Soeken, 1989)

3. Why did we do a pilot study? • At the core of Pomona 2 is an untested interview schedule • We wanted to try the schedule out on a small sample so that it could be refined before administration to the full sample

4. What we hoped to find out (1): • Find out rates of consent & refusal amongst PWID and their carers • Find out whether the QA can be used by PWID themselves as well as by their carers • Record the time taken to complete the questionnaire and decide whether it is reasonable • Identify ambiguities and difficult questions • Find out whether, after translation, the survey items were meaningful in all member states

5. What we hoped to find out (2): • Assess whether each question gives an adequate range of responses • Establish that replies can be interpreted in terms of the information that is required • Check that all questions are answered • Re-word or re-scale any questions that are not answered as expected • Examine inter-respondent reliability • Examine the utility of scoring procedures & data entry • Assess whether the information which is yielded is potentially useful

6. What we did: The ‘Pilot Protocol’ • Sample (same area and stratification as main study): • 8 people in each MS • 2 with SLD with family • 2 with MLD with family • 2 with SLD in residential care • 2 with MLD in residential care • Reliability: • For 2 of the 8 people in each MS the interview was repeated with a different respondent • Evaluation forms • Consent / refusal rates • Time taken to complete (PWID & Carers) • Item-by-item evaluation (e.g., understandability, range of options etc.) • Data input

7. What we found out *CAVEAT* - ethical approval was required before the pilot study could begin. Most MS experienced delays receiving approval so the following is based only on the results of pilot studies in Italy, Ireland, the Netherlands & the UK • Ethics – despite delays, approval granted in all countries. Some small amendments to consent forms & some additional assurances about confidentiality needed in some countries. • Consent / refusal rates: In most countries all those who were asked gave consent or assent. • Interview duration: PWID – mean = < 1 hour; Carers – mean = 45 minutes • Content • Some additional items suggested (e.g., autism, diet, satisfaction with treatment) • Some items need additional response options (e.g., seizure frequency) • Some items need reformatting for consistency (e.g., ‘no’ option for list of health problems) • Reliability – In UK, inter-respondent reliability was near 100% • Database – ‘fit for purpose’

8. Health Conditions

9. Lifestyle

10. General Health

11. Access to Healthcare

12. Conclusions • The Pilot Study has been an important component of the overall study • The feasibility of the questionnaire has been demonstrated • The questionnaire can be refined on the basis empirical evidence • Now have an idea of the type of information which can be expected from the study