Evidence map›Paper›PMID 34211304›Full record

ArticlePatient related outcome measures2021

Do Generic Preference-Based Measures Accurately Capture Areas of Health-Related Quality of Life Important to Individuals with Amyotrophic Lateral Sclerosis: A Content Validation Study.

Nicole Peters, Vanina Dal Bello-Haas, Tara Packham, Marvin Chum, Colleen O'Connell, Wendy S Johnston, Joy C MacDermid, John Turnbull, Jill Van Damme, Ayse Kuspinar

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In one paragraph

Article in Patient related outcome measures, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
–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 synthesis or guideline pooled it.

  1. Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
    Pooled it
  2. Article
  3. Article
  4. Article
  5. The Patient Generated Index (PGI) as an early-warning system for predicting brain health challenges: a prospective cohort study for people living with Human Immunodeficiency Virus (HIV).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023
    Article
  6. 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

10 authors.

Nicole PetersSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
Vanina Dal Bello-HaasSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.ORCID 0000-0003-4066-156X
Tara PackhamSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.ORCID 0000-0002-5593-1975
Marvin ChumDepartment of Medicine, McMaster University, Hamilton, ON, Canada.
Colleen O'ConnellStan Cassidy Centre for Rehabilitation, Fredericton, NB, Canada.
Wendy S JohnstonDepartment of Medicine, University of Alberta, Edmonton, AB, Canada.
Joy C MacDermidSchool of Physical Therapy, Western University, London, ON, Canada.
John TurnbullDepartment of Medicine, McMaster University, Hamilton, ON, Canada.
Jill Van DammeSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.ORCID 0000-0002-6792-7447
Ayse KuspinarSchool of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.ORCID 0000-0002-3886-0407

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveThe objectives of this study were to 1) assess the content validity of generic preference-based measures (GPBMs), and (2) examine the convergent validity of the EuroQol 5 Dimension 5 Level (EQ-5D-5L), against the Patient Generated Index (PGI) in Amyotrophic Lateral Sclerosis (ALS).

methodsParticipants were recruited from 3 clinical sites across Canada. The PGI, EQ-5D-5L and Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) were administered through an online or hardcopy survey and scores compared for convergent validation. Domains nominated by participants as important to their health-related quality of life were generated using the PGI, classified using the International Classification of Functioning, Disability and Health (ICF) and mapped onto GPBMs to determine content coverage.

resultsFifty-two participants (N=28 female; 61.3 ± 11.6 mean age ± standard deviation (SD); 3.5 ± 2.9 mean ± SD years since diagnosis) completed this study. The top three ICF domains identified by participants were recreation and leisure, lower limb mobility, and interpersonal relationships. The Quality of Well-Being Self-Administered (QWB-SA) scale had the highest content coverage (87%) and the Health Utilities Index 3 (HUI3) had the lowest (33%). Two domains were covered by all GPBMs and no GPBM included all domains identified as important by participants. A moderate correlation coefficient of 0.52 between the PGI and EQ-5D-5L was found.

conclusionThe majority of GPBMs covered only approximately half of the domains important to individuals with ALS suggesting the need for an ALS specific preference-based measure to better reflect the health-related quality of life of this population.

Indexed as

amyotrophic lateral sclerosiseconomic evaluationhealth-related quality of lifepatient reported outcome measurespsychometric properties

Identifiers

PMID34211304
PMCPMC8242131

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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.