Evidence map›Paper›PMID 40560475›Full record

SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025

Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures.

Rosie Bamber, Theocharis Stavroulakis, Christopher McDermott, Jill Carlton

Abstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

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

  1. Pooled it
  2. Review
  3. 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

4 authors.

Rosie BamberDivision of Neuroscience, School of Medicine and Population Health, Sheffield Institute for Translational Neuroscience (SITraN), University of Sheffield, 385A Glossop Road, S10 2HQ, Sheffield, U.K.ORCID http://orcid.org/0009-0006-1615-1817
Theocharis StavroulakisDivision of Neuroscience, School of Medicine and Population Health, Sheffield Institute for Translational Neuroscience (SITraN), University of Sheffield, 385A Glossop Road, S10 2HQ, Sheffield, U.K.ORCID http://orcid.org/0000-0002-3535-7822
Christopher McDermottDivision of Neuroscience, School of Medicine and Population Health, Sheffield Institute for Translational Neuroscience (SITraN), University of Sheffield, 385A Glossop Road, S10 2HQ, Sheffield, U.K.ORCID http://orcid.org/0000-0002-1269-9053
Jill CarltonSheffield Centre for Health and Related Research (SCHARR), School of Medicine and Population Health, University of Sheffield, Regent Court, 30 Regent Street, S1 4DA, Sheffield, U.K.. j.carlton@sheffield.ac.uk.ORCID http://orcid.org/0000-0002-9373-7663

Funding

National Institute for Health and Care Research NIHR301648
6 · The paper itself

Abstract

purposeAmyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative condition with swift progression. The devastating impact of ALS affects the health-related quality of life (HRQoL) of informal carers. Various person reported outcome measures (PROMs) have been used to assess HRQoL in informal carers in ALS, yet their validity remains unclear. This review aimed to identify and evaluate the content validity of HRQoL PROMs for informal carers in ALS.

methodsThis review was conducted according to best practice COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology. Two literature searches were conducted in November 2023 and April 2024 across MEDLINE, PsycINFO, Embase, CINAHL, the Cochrane Database of Systematic Reviews, CENTRAL and Google Scholar, to identify HRQoL PROMs used with informal carers in ALS, PROM development articles, and psychometric literature. Evidence synthesis followed COSMIN guidance.

results12,276 articles were screened, and 109 PROMs were identified, with 43 undergoing full COSMIN assessment. Content validity ratings were 'Inconsistent' or 'Insufficient' for all PROMs. All PROMs, except the CarerQoL, were rated 'Insufficient' for comprehensiveness. Only 18.6% of PROMs included informal carers in development. Quality of evidence supporting content validity ratings was 'Very Low' for 93% of PROMs.

conclusionHRQoL PROMs used with informal carers in ALS lack evidence to support their content validity, restricting their utility for this purpose. Existing literature on the impact of caring in ALS on informal carers' HRQoL should be interpreted cautiously. Further research is required to establish the content validity of HRQoL PROMs used for this cohort.

Indexed as

Amyotrophic Lateral SclerosisCaregiversPatient Reported Outcome MeasuresQuality of LifeHumansPsychometricsReproducibility of ResultsAmyotrophic lateral sclerosisCarersCaringContent ValidityCOSMINHealth-related quality of lifeMotor neuron diseasePerson reported outcome measureQuality of lifeSystematic review

Identifiers

PMID40560475
PMCPMC12535500

What Socratic holds

Textmetadata
LicenceCC BY
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 Socratic graph.