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Quality of Life Concepts: Lessons for Disability Management

Quality of Life Concepts: Lessons for Disability Management. Peter Rosenbaum, MD, FRCP(C) Professor of Paediatrics, McMaster University, Co-Founder, CanChild Centre for Childhood Disability Research, Canada Research Chair in Childhood Disability. My Goals for this Talk….

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Quality of Life Concepts: Lessons for Disability Management

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  1. Quality of Life Concepts: Lessons for Disability Management Peter Rosenbaum, MD, FRCP(C) Professor of Paediatrics, McMaster University, Co-Founder, CanChild Centre for Childhood Disability Research, Canada Research Chair in Childhood Disability

  2. My Goals for this Talk… • To introduce some of the concepts in the field of ‘quality of life’… • To discuss why there is confusion in the field, and how you might be informed when reading the emerging literature… • To share some data from our work to illustrate these ideas… • To provoke and encourage some discussion about these issues…

  3. Theme I: Quality of Life… What Do We Mean by QoL? • I’d like to begin with your thoughts about what the concept ‘quality of life’ (QoL) means…Let’s pause and discuss…

  4. One Useful Definition… • Consider… • WHO defines QoL as: “the individual’s perception of theirposition in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns”

  5. Theme I: Quality of Life… What Do We Mean?QoL vs. HRQoL • Does ‘quality of life’ differ from ‘health-related quality of life’ (HRQoL) – and if so, how and why?Let’s pause and discuss…

  6. HRQoL • ‘Health-related’ implies that we are interested in the impact of the condition on the person and on their ‘QoL’ • In effect, HRQoL equates Functional Status and Quality Of Life. • What do people think about this idea:Usefulness?...Limitations?...

  7. Theme I: Quality of Life… Whose Views Matter? • Many possible perspectives on QoL… • Whose perspectives can you think of? • The person themself • A parent or other outside (‘proxy’) observer • A health professional (which ones, and does it matter?) • A ‘community’ perspective • Why does this matter?… • How might these perspectives differ – and why?

  8. Consider this matrix… Whose Perspective? Self:What do I know about ‘me’? Other:What can others know about ‘me’? Objective Functional Status Subjective

  9. Theme 2: ‘Enhancing’ QoL • Whose QoL are we trying to enhance? • Why does this matter? • What are the implications of answering this question? Let’s pause and discuss…

  10. Theme 2: ‘Enhancing’ QoL • What do we do with our services?… • Why do we those things?… • What tools do we use to evaluate our Rx?… • In other words, once again there are important decisions to be made about what we mean.

  11. Theme 2: ‘Enhancing’ QoL • It is obvious that we need to know what we mean by ‘QoL’ before we can begin to think about ‘enhancing’ it. • Let’s leave this idea on the side and come back to it when we have addressed some of the other elements of this discussion…

  12. Theme 3: Measuring QoL • To choose the right measure(s), whether for research or for clinical evaluations, we need to ask:What’s the question? • Consider the following slide…

  13. Theme 3: Measuring QoL • So – what do WE want to know, and why? • It is essential to have a good answer to this issue (i.e., that we need to ask a good question) before we start to measure QoL (or anything else)!

  14. Why are we asking about QoL? • Consider: What will we do with the answers? • Consider: What do we think is going on with whatever we do that might have an impact on QoL? What impacts might there be, and on what aspects of people’s lives?

  15. Theme 3: Measures of QoL – Content • Look carefully at the concepts and the items in any measure… • Where did the items come from? • E.g., professionals, parents, children, people with the condition, community citizens… • What are the items asking about? • Is this what WE want to know?

  16. Theme 3: Measuring QoL – Reliability • As with any measure, for any aspect of function, we need to answer a series of questions… • What does ‘reliability’ mean? • Is the measure RELIABLE? • What kinds of reliability are there? • What kinds of ‘reliability’ do we need? • Why do we need things to be ‘reliable’? • What can be done to enhance reliability?

  17. Theme 3: Measuring QoL – Validity • What do we mean by ‘valid’? • Is the measure we might want to use VALID, and for what? • In other words: ‘Does the instrument measure what we want to measure?’

  18. Theme 3: Measuring QoL – Validity • Remember - measures are tools • They may be discriminative… • They may predictive of future status… • They may be evaluative to detect change… • What do WE want to do, and can the measure(s) we have selected do that ‘job’?

  19. Measures of Quality of Life – Examples • HRQoL tools • HUI-3 – a ‘utility’ measure • SF-36 or SF-12 – measures of adult function • PedsQL – mainly looks at emotional status • Intrapersonal tools • KIDSCREEN… • HRQL Epilepsy • QoLPWDD – I’ll say more after the break

  20. Theme 4: What Are We Trying to Achieve? • This of course relates to the theme of “Enhancing” QoL • The question in the title of this slide forces us to face the challenge of deciding our basic philosophy of services for children with disabilities • This requires a lot of discussion with colleagues in the program.

  21. Theme 4: What Are We Trying to Achieve? • So we come back to some basics! • Is our focus on… • ‘Fixing’ the disability? • ‘Child development’? • Child alone? • Child and family? • QoL? • All are reasonable goals, but until we are clear we cannot move ahead.

  22. Description of ASQME (“ASK” ME!) • The Adolescent Study of Quality of Life, Mobility and Exercise (ASQME) considers a population-based sample of adolescents with cerebral palsy in the province of Ontario, Canada 2108 Children identified across Ontario Ontario Motor Growth study (1996-2001) 1304 Randomly selected 657 Included in the analysis 343 Children moving through adolescence ASQME (2002-2007) 203 Participated in the QOL study 230 Participated

  23. ‘… the degree to which aperson enjoys the important possibilities of his or her life.’ OR‘How good is your life for you? ‘within the community’ preferences derived from individual being assessed holistic ‘… the value assigned to the duration of life as modified by the impairments, functional state, perceptions, and social opportunities that are influenced by disease, injury, treatment, or policy.’ ‘within the skin’ preferences derived from normative sample econometric How did we assess quality of life? Quality of Life Instrument for People with Developmental Disabilities (Short Version) Utility values derived from the Health Utilities Index – Mark 3(HUI-3)

  24. Scores for ‘Overall QOL’ • Varied by ability to self-report (p=0.011) • Did not vary by GMFCS level (p=0.590) • GMFCS level * Ability to self-report (p=0.823) Self-report Proxy-report Overall QOL scores I II III IV V GMFCS Level Overall QOL scores

  25. HUI-3 Scores for Overall Utility • Significant correlation between Overall utility values and GMFCS level (r=-0.81, p<0.001) Overall utility values I II III IV V GMFCS Level Overall utility values

  26. Head-to-head: QOL and HRQOL • How strong is the relationship between QOL and HRQOL? • Association assessed with linear regression • Dependent Variable = QOL Instrument scores • Independent Variable = Overall utility values • QOL Instrument scoresrOverall utility values • Being 0.37 • Belonging 0.19 • Becoming 0.20 • Overall QOL 0.28 p<0.01

  27. Selected References (to get you started!) BACKGROUND and CONCEPTS: • Livingston M, Rosenbaum PL, Russell D et al. Quality of life among adolescents with cerebral palsy: descriptive and measurement issues. DMCN 2007;49(3): 225-31. • Rosenbaum PL. Archives of Diseases in Childhood. Invited commentary: Perspectives on Dickinson et al.: Self-reported quality of life of 8-12 year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007: 369,2171-2177. • Albrecht GL, Devlieger PJ. (1999) The disability paradox: high quality of life against all odds. Soc Sci Med 1999; 48: 977-988. • DMCN Supplement in 2008 with a report of a workshop. HRQoL MEASURES: • Feeny DH et al. Health Utilities Index. In: Spilker B, editor. Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edn. Philadelphia: Lippincott-Raven. p 239-252, 1996.

  28. QoL MEASURES • Dickinson HO et al. Self-reported quality of life of 8-12 year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007; 369: 2171-2177. • KIDSCREEN Group Europe. The KIDSCREEN questionnaires. Quality of life questionnaires for children and adolescents—handbook. Lengerich: Papst Science Publisher, 2006. • Raphael D, Brown I, Renwick R. (1999) Psychometric Properties of the Full and Short Versions of the Quality of Life Instrument Package: results from the Ontario province-wide study. Int J Disab Dev Edu 1999; 46: 157-168. • Rosenbaum PL, Livingston MH, Palisano RJ et al. Quality of life and health-related quality of life of adolescents with cerebral palsy. DMCN 2007; 49(7): 516-21. • Ronen GM, Streiner DL, Rosenbaum PL., Canadian Pediatric Epilepsy Network. Health-Related Quality of Life in Children with Epilepsy: Development and Validation of Self-Report and Parent Proxy Measures. Epilepsia 2003; 44: 598-612.

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