CADTH 2015 Symposium

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 14th, 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 component Valuation component
Preference-Based Measures
+

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
HUI
• “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
AcknowledgementsAcknowledgements