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SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES The (Inevitable and Acceptable) Consequences of Using Generic Patient- Reported Outcomes in Technology.

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Presentation on theme: "SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES The (Inevitable and Acceptable) Consequences of Using Generic Patient- Reported Outcomes in Technology."— Presentation transcript:

1 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES The (Inevitable and Acceptable) Consequences of Using Generic Patient- Reported Outcomes in Technology Appraisals: Issues of Accessibility in Challenging Clinical Contexts CADTH Symposium April 14 th, 2015 David Whitehurst, PhD Faculty of Health Sciences, Simon Fraser University Centre for Clinical Epidemiology and Evaluation (C2E2) Fraser Health Authority International Collaboration On Repair Discoveries (ICORD)

2 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Overview Key issues - health-related quality of life - methodological rigour Challenging contexts - spinal cord injury - aphasia

3 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Overview Key issues - health-related quality of life - methodological rigour Challenging contexts - spinal cord injury - aphasia “I know that validity isn’t as important to you guys but in our world it’s everything.”

4 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Generic v Condition-Specific Week #10: Measuring Benefits for Economic Evaluation

5 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Generic v Condition-Specific (1) Condition-specific measures -narrow assessment of a dimension (or dimensions) of health for a particular condition -sensitive to the condition under investigation -unable to be used for cross-condition comparisons E.g., Asthma Quality of Life Questionnaire (AQLQ) Dermatology Life Quality Index (DLQI) Arthritis Impact Measurement Scale (AIMS) Dementia Quality of Life (DEMQOL) Week #10: Measuring Benefits for Economic Evaluation

6 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Generic v Condition-Specific (2) Generic measures -broader assessment of HRQoL -enables cross-condition comparisons -can be insensitive (being less sensitive is not surprising) E.g., Nottingham Health Profile (NHP) SF-36, SF-12 & SF-6D Quality of Wellbeing Scale (QWB) EQ-5D-3L & EQ-5D-5L Health Utilities Index (HUI) Week #10: Measuring Benefits for Economic Evaluation

7 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Generic v Condition-Specific (2) Generic measures -broader assessment of HRQoL -enables cross-condition comparisons -can be insensitive (being less sensitive is not surprising) ‘profile’ & ‘index’ measures E.g., Nottingham Health Profile (NHP) SF-36, SF-12 & SF-6D Quality of Wellbeing Scale (QWB) EQ-5D-3L & EQ-5D-5L Health Utilities Index (HUI)

8 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES SF-36 (profile) Source: http://www.sf-36.org/tools/sf36.shtml (amended for presentation purposes)

9 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES EQ-5D-3L (index & profile)

10 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Q1... Q2... Q3... Q4... Q5... Q6... Descriptive componentValuation component Preference-Based Measures + SELF-REPORT QUESTIONNAIRE

11 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES The ‘Holy Grail’ – a Futile Pursuit EQ-5D history: complementarity -“The raison d'être of the EuroQol Instrument is to provide a simple “abstracting” device, for use alongside other more detailed measures of HRQoL, to serve as a basis for comparing health care outcomes using a basic “common core” of QoL characteristics which most people are known to value highly” Why abandon convention? -an inherent trade-off -how inappropriate is too inappropriate? Kind P, Brooks R, Rabin R, eds. EQ-5D Concepts and Methods: A Developmental History. Dordrecht, The Netherlands: Springer, 2005.

12 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Spinal Cord Injury & Secondary Complications: A Mixed-Methods Evaluation of Preference-Based Instruments Funding: Rick Hansen Institute Translational Research Program Team: David GT Whitehurst Marcel FS Dvorak Nicole Mittmann Vanessa K Noonan Nitya Suryaprakash Stirling Bryan

13 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES SF-36v2 (SF-6D) “... the walking one hundred yards. Well, I can wheel 100 hundred yards without thinking but I’m not going to put that on here, I’m going to put ‘no’ and they look at it and say oh! that’s a problem” (FG3). “When I saw walking, I just kind of took it as wheeling... I’ll just say wheeling instead, I don’t mind crossing that off and putting that” (FG2). Medical Outcomes Study 36-item Short Form Health Survey (version 2)

14 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES HUIHUI “I have a really good quality of life but the way I had to answer the questions didn’t give me an option really to express that.” (FG1). “Question nine, they’re beating around the bush about equipment but they’re not mentioning you’re unable to walk but you are able to get around.” (FG3) Health Utilities Index

15 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Trade-off: generic measurement vs. relevancy AQoL-8D was the most preferred instrument Allowed us to make an evidence-based judgement regarding survey content Whitehurst DGT, et al. Health and Quality of Life Outcomes 2014

16 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES

17 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES AQoL-8D ‘Mobility’ item responses of individuals at the lowest level on the EQ-5D-5L ‘Mobility’ dimension (n = 261; 72%)

18 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Ranked scatter graph of health state values for AQoL-8D, EQ-5D-5L, HUI-3 and SF-6D

19 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES

20 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES ‘walk’ or ‘walking’ no reference to ‘walking’

21 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Preference-based HRQoL in the context of aphasia Team:David GT Whitehurst Aura Kagan Nina Simmons-Mackie Rebecca Palmer Nicholas R Latimer Jeffrey S Hoch

22 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Aphasia & QALYs Systematic review - very broad inclusion criteria - six studies identified; no conceptual or empirical evidence for the use of any existing instrument - feasibility versus validity Whitehurst DGT, et al. Aphasiology 2014

23 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Aphasia & QALYs Systematic review - very broad inclusion criteria - six studies identified; no conceptual or empirical evidence for the use of any existing instrument - feasibility versus validity The ‘Arthur Brisbane’ approach - aphasia-specific? - brand new generic outcome? - convert an existing instrument? Whitehurst DGT, et al. Aphasiology 2014

24 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Aphasia & QALYs: Pilot #1 (Ontario)

25 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Aphasia & QALYs: Pilot #2 (Sheffield, England)

26 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Summary / Discussion Generic preference-based instruments are complementary measures Understandable air of skepticism Divergence from convention is not an appropriate first step

27 SFU SIMON FRASER UNIVERSITY FACULTY OF HEALTH SCIENCES Acknowledgements

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