cadth symposium 2015 d3 (whitehurst)

SFUSIMON FRASER UNIVERSITYFACULTY 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 SymposiumApril 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)


Overview• Key issues

- health-related quality of life- methodological rigour

• Challenging contexts- spinal cord injury- aphasia


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.”


Generic v Condition-Specific

Week #10: Measuring Benefits for Economic Evaluation


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

comparisonsE.g., Asthma Quality of Life Questionnaire (AQLQ)

Dermatology Life Quality Index (DLQI)Arthritis Impact Measurement Scale

(AIMS)Dementia Quality of Life (DEMQOL)




• 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-6DQuality of Wellbeing Scale (QWB)EQ-5D-3L & EQ-5D-5LHealth Utilities Index (HUI)




• 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-6DQuality of Wellbeing Scale (QWB)EQ-5D-3L & EQ-5D-5LHealth Utilities Index (HUI)


SF-36(profile)

Source: http://www.sf-36.org/tools/sf36.shtml (amended for presentation purposes)


EQ-5D-3L

(index & profile)


Q1...

Q2...

Q3...

Q4...

Q5...

Q6...

Descriptive component

Valuation component

Preference-Based Measures

+

SE

LF-R

EPO

RT

QU

ESTIO

NN

AIR

E


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.


Spinal Cord Injury & Secondary Complications: A Mixed-Methods Evaluation of Preference-Based Instruments

Funding: Rick Hansen Institute Translational Research Program

Team: David GT WhitehurstMarcel FS DvorakNicole MittmannVanessa K NoonanNitya SuryaprakashStirling Bryan


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)


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


• 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


AQoL-8D ‘Mobility’ item responses of individuals at the lowest level on the

EQ-5D-5L ‘Mobility’ dimension

(n = 261; 72%)


Ranked scatter graph of health state values for AQoL-8D, EQ-5D-5L, HUI-3 and SF-6D


‘walk’ or ‘walking’

no reference to ‘walking’


Preference-based HRQoL in the context of aphasia

Team: David GT WhitehurstAura KaganNina Simmons-MackieRebecca PalmerNicholas R LatimerJeffrey S Hoch


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


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


Aphasia & QALYs: Pilot #1 (Ontario)


Aphasia & QALYs: Pilot #2 (Sheffield, England)


Summary / Discussion

• Generic preference-based instruments are complementary measures

• Understandable air of skepticism

• Divergence from convention is not an appropriate first step


AcknowledgementsAcknowledgements

http://rickhansen.com/code/navigate.aspx?Id=1

cadth symposium 2015 d3 (whitehurst)

Health & Medicine

phd faculty of health

dimensions of health

simon fraser university

health care outcomes

crosscondition comparisons

index profile

related quality of life

d history