Evidence map›Paper›PMID 36881218›Full record

SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2023

Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review.

Faryal Zahir, Alicia Hanman, Nazmehr Yazdani, Sabrina La Rosa, Gemma Sleik, Brooke Sullivan, Ava Mehdipour, Selina Malouka, Ayse Kuspinar

Abstract readSystematic Review
PubMed Publisher
In one paragraph

Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. 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

9 authors.

Faryal Zahir *School of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Alicia Hanman *School of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Nazmehr YazdaniSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Sabrina La RosaSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Gemma SleikSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Brooke SullivanSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Ava MehdipourSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Selina MaloukaSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada.
Ayse KuspinarSchool of Rehabilitation Science, McMaster University, 1400 Main St. W., IAHS, Hamilton, ON, L8S 1C7, Canada. kuspinaa@mcmaster.ca.ORCID http://orcid.org/0000-0002-3886-0407

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

purposeAmyotrophic lateral sclerosis (ALS) is the most common motor neuron disease in adults. There are many patient-reported outcome measures (PROMs) for measuring quality of life (QoL) and health-related QoL (HRQoL) within this population; however, there is limited consensus regarding which are most valid, reliable, responsive, and interpretable. This systematic review assesses the psychometric properties and interpretability of QoL and HRQoL PROMs for individuals with ALS.

methodsThis review was conducted following the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology for systematic reviews of PROMs. MEDLINE, EMBASE, and CINAHL databases were searched. Studies were included if their aim was to evaluate one or more psychometric properties or the interpretability of QoL or HRQoL PROMs in individuals with ALS.

resultsWe screened 2713 abstracts, reviewed 60 full-text articles, and included 37 articles. Fifteen PROMs were evaluated including generic HRQoL (e.g., SF-36), ALS-specific HRQoL (e.g., ALSAQ-40), and individualized QoL (e.g., SEIQoL) measures. Evidence for internal consistency and test-retest reliability were acceptable. For convergent validity, 84% of hypotheses were met. For known-groups validity, outcomes were able to distinguish between healthy cohorts and other conditions. Responsiveness results ranged from low to high correlations with other measures over 3-24 months. Evidence for content validity, structural validity, measurement error, and divergent validity was limited.

conclusionThis review identified evidence in support of the ALSAQ-40 or ALSAQ-5 for individuals with ALS. These findings can guide healthcare practitioners when selecting evidence-based QoL and HRQoL PROMs for patients and provide researchers with insight into gaps in the literature.

Indexed as

Amyotrophic Lateral SclerosisQuality of LifeAdultHumansPatient Reported Outcome MeasuresPsychometricsReproducibility of ResultsAmyotrophic lateral sclerosisHealth-related quality of lifeInterpretabilityPsychometric propertiesQuality of life

Identifiers

PMID36881218

What OpenQuestion holds

Textmetadata
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.