Evidence map›Paper›PMID 30567556›Full record

ReviewHealth and quality of life outcomes2018

A review of quality of life themes in Duchenne muscular dystrophy for patients and carers.

Lesley Uttley, Jill Carlton, Helen Buckley Woods, John Brazier

Open access · goldAbstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Health and quality of life outcomes, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
40citing papers in PubMed, 5 pooled it
2.5field-weighted citation impact, top 10% of its field
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

40 citing papers in PubMed, 5 syntheses or guidelines pooled it, 93 citations in OpenAlex.

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  5. Characterizing health state utilities associated with Duchenne muscular dystrophy: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020
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  13. A Qualitative Examination of the Content Validity of the EQ-5D-5L and EQ-5D-Y-3L in Adult and Paediatric Patients With Duchenne Muscular Dystrophy.Health expectations : an international journal of public participation in health care and health policy · 2025
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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 at 1 institution in 1 country.

Lesley UttleySchool of Health and Related Research (ScHARR), The University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA, UK. l.uttley@sheffield.ac.uk.ORCID http://orcid.org/0000-0003-4603-9069
Jill CarltonSchool of Health and Related Research (ScHARR), The University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA, UK.
Helen Buckley WoodsSchool of Health and Related Research (ScHARR), The University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA, UK.
John BrazierSchool of Health and Related Research (ScHARR), The University of Sheffield, Regent Court, 30 Regent Street, Sheffield, S1 4DA, UK.
University of Sheffield · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Duchenne Muscular Dystrophy (DMD) is a severe, life-limiting and incurable condition. However, studies estimating quality of life and those measuring actual quality of life in people living with DMD vary considerably. This discrepancy indicates potential difficulties with assessing quality of life using common generic quality of life instruments in this rare and unique population. This study sought to document the range of themes relevant to quality of life for people with DMD by examining the published literature and additionally to investigate the themes that are relevant to quality of life for carers and the wider family. Eligible studies for the review were primary studies of any study design that reported outcomes or themes relevant to quality of life for either people with DMD, their families, or both. A review of studies identified from searching medical bibliographic sources between 2010 and 2016 found 45 relevant published studies. A thematic framework is proposed to categorise the themes identified into: i. physical; ii. psychological; iii. Social; iv. well-being domains. A final "other" domain was included to encompass themes identified from the literature that are not covered by commonly used quality of life instruments. The rich variety of themes identified from the review highlights that DMD has a complex quality of life profile which is not currently captured by standard quality of life tools that are commonly employed in the healthcare setting. The findings also highlight that the resulting impact on the quality of life of carers and wider family of people with DMD requires consideration.

Indexed as

Quality of LifeCaregiversCross-Sectional StudiesFemaleHealth SurveysHumansMaleMuscular Dystrophy, DuchenneQualitative ResearchDuchenne muscular dystrophyLiterature reviewQuality of lifeThematic analysisWider family impact

Identifiers

PMID30567556
PMCPMC6299926
OpenAlexW2904047048

What OpenQuestion 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 OpenQuestion graph.