Evidence map›Paper›PMID 28298567›Full record

ArticleThe Journal of rheumatology2017

OMERACT Quality-adjusted Life-years (QALY) Working Group: Do Current QALY Measures Capture What Matters to Patients?

Logan Trenaman, Annelies Boonen, Francis Guillemin, Mickael Hiligsmann, Alison Hoens, Carlo Marra, Will Taylor, Jennifer Barton, Peter Tugwell, George Wells and 1 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Journal of rheumatology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed.

  1. Review
  2. Capturing what matters: updating NICE methods guidance on measuring and valuing health.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022
    Review
  3. Factors contributing to the ceiling effect of the EQ-5D-5L: an analysis of patients with prostate cancer judged "no-problems".Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020
    Observational
  4. Article
  5. Article
  6. Classification criteria in Sjögren's syndrome.Annals of translational medicine · 2017
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Logan TrenamanFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Annelies BoonenFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Francis GuilleminFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Mickael HiligsmannFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Alison HoensFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Carlo MarraFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Will TaylorFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Jennifer BartonFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Peter TugwellFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
George WellsFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Nick BansbackFrom the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA. nick.bansback@ubc.ca.

Funding

Goal concordance in rheumatoid arthritis in diverse populationsK23AR064372 · NIAMS · OREGON HEALTH & SCIENCE UNIVERSITY · PI BARTON, JENNIFER L · 2015 to 2019
$805k
NIAMS NIH HHS K23 AR064372
6 · The paper itself

Abstract

objectiveTo understand the limitations with current patient-reported outcome measures (PROM) used to generate quality-adjusted life-years (QALY) in rheumatology, and set a research agenda.

methodsTwo activities were undertaken. The first was a scoping review of published studies that have used PROM to generate QALY in rheumatology between 2011 and 2016. The second was an interactive "eyeball test" exercise at Outcome Measures in Rheumatology 13 that compared subdomains of widely used generic PROM, as identified through the scoping review, to subdomains of the Assessment of SpondyloArthritis Health Index (ASAS-HI) condition-specific PROM for ankylosing spondylitis.

resultsThe scoping review included 39 studies. Five different PROM have been used to generate QALY in rheumatology; however, the EQ-5D and Short Form 6 Dimensions (SF-6D) were used most frequently (in 32 and 9 of included studies, respectively). Special interest group participants identified energy/drive and sleep as 2 key subdomains of the ASAS-HI instrument that may be missed by the EQ-5D, and sexual function as potentially missed by the SF-6D. Participants also expressed concerns that aspects of the process of care and non-health outcomes may be missed. Three ways of incorporating additional subdomains were discussed, including using an alternative generic PROM, modifying an existing generic PROM with "bolt-on" subdomain(s), and generating societal weights for a condition-specific PROM.

conclusionThree priorities for future research were identified: understanding whether the EQ-5D and SF-6D identify what matters to patients with different rheumatic conditions, analyzing how much patients value process or non-health outcomes, and identifying which approaches to incorporating a greater number of subdomains into the QALY are being undertaken in other disease areas.

Indexed as

Patient ParticipationQuality-Adjusted Life YearsQuality of LifeHumansPsychometricsSpondylarthritisCOST-BENEFIT ANALYSISOMERACTQUALITY-ADJUSTED LIFE-YEARSRHEUMATOLOGY

Identifiers

PMID28298567
PMCPMC6353610

What OpenQuestion holds

Textmetadata
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Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.