Surveying the Health of People with Intellectual Disabilities

1. Surveying the Health of People with Intellectual Disabilities

2. Round Table Aim: “ … to develop a framework for the management of chronic disease in people with intellectual disability.” Theme – Day 1: “ The current evidence base on chronic disease in people with intellectual disability”.

3. What do we know about the health of people with intellectual disabilities? “abundant evidence that people with intellectual disabilities are more likely to live in poor health and die earlier than those who do not have intellectual disabilities (Ouellette-Kuntz, 2005;Bittles et al., 2002; Durvasula & Beange 2001)” Emerson & Durvasula, 2005 Journal of Applied Research in Intellectual Disabilities Volume 18, p95

4. How are health indicators typically measured? • Population Census • Vital Statistics / Registration System • Population Based (Household) Surveys • Smaller in-depth Surveys • Hospital / Health Centre Records – “point of contact data”

5. Problems with this approach • Overall, existing health surveys tend to exclude PWID or are inappropriate (Walsh, Kerr & van Schrojenstein Lantman-de Valk, 2003) • Hinders attempts to monitor inequality in chronic disease • Existing surveys don’t help to explain inequality (Ouellete-Kuntz, 2005) • Do not include ‘modifiable factors’: e.g., lifestyle, social networks, living conditions, access to services (Ouellete-Kuntz, 2005)

6. To identify and operationalise health indicators relevant to PWID • To develop a survey instrument which includes the 18 indicators • To pilot the new survey • To gather data using the finalised survey on a sample (N=100) in each of 14 EU countries.

8. Operationalising the Indicator Set

9. Survey Format & Structure • The bulk of the survey is administered as a semi-structured interview – either with the PWID, with their carer, or both. • Part of the survey is posted to the carer for completion before the interview is conducted.

10. Who is the most appropriate person to respond to health surveys about PWID? • Participatory research advocates that PWID act as research respondents at the very least. • But, what proportion of PWID would actually be able to respond to this type of survey? • Not tested with respect to health surveys, so can we learn from the literature on quality of life assessment?

11. Subjective wellbeing Values & Importance Objective conditions Physical wellbeing Emotional wellbeing Social wellbeing Civic wellbeing Productive wellbeing Material wellbeing • Income • Housing • quality • Possessions • Transport • Neighbour- • hood • Health • Fitness • Mobility • Safety • Personal • relationships • Community • involvement • Competence • Choice • Independence • Productivity • Mental- • health • Status • Sexuality • Faith • Self- • esteem • Citizenship • Voting

12. Like the concept of ‘satisfaction’, the notion of ‘health’ is fairly abstract. • Given language limitations of people with intellectual disabilities, what proportion can express satisfaction, and what proportion can do so without bias? • For people who do not have the understanding or language to express satisfaction … can other people (staff, carers) validly represent their point of view?

13. Study design • Various subjective and objective measures of choice, constructive activity, and social and community integration. • Stratified random sample of 154 people who lived in 47 settings. • Residents’ adaptive behaviour also assessed.

14. Levels of non-response and response bias

15. Respondents who did not show response bias

16. Correspondence between self-report and staff-report

17. Correspondence between self-report and staff-report

18. 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

19. What we found out • 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 – Based on 8 respondent pairs precise item test-retest reliability was 89% and precise item inter-respondent reliability was 81%. (i.e., when 2 different carers were interviewed about the PWID). • Did not explore correspondence between PWID and carers interviewed separately. • The psychometric properties of the instrument, including reliability data, will be explored fully within the main survey. • Database – ‘fit for purpose’

20. Health Conditions

21. Lifestyle

22. General Health

23. Access to Healthcare

24. Health Checks

25. Conclusion • The Pilot Study has demonstrated feasibility of the questionnaire • The questionnaire has been refined on the basis of the pilot and named as the ‘Pomona 18’ • Based on research on the QOL of PWID it is likely that only the most able PWID will be able to act as respondents to the Pomona 18 • However, the QOL literature also indicates that using proxy respondents should be acceptable when PWID cannot self-report because all the Pomona 18 is essentially an objective measure • Now have an idea of the type of information which can be expected from the study

26. perry@cf.ac.uk • http://www. pomonaproject.org • Pomona I http://ec.europa.eu/health/ph_projects/2002/monitoring/monitoring_2002_05_en.htm • Pomona II: http://ec.europa.eu/health/ph_projects/2004/action1/action1_2004_14_en.htm