Evidence map›Paper›PMID 27812849›Full record

ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2017

Can in-the-moment diary methods measure health-related quality of life in Duchenne muscular dystrophy?

Paula Bray, Anita C Bundy, Monique M Ryan, Kathryn N North

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
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6citing papers in PubMed, 3 pooled it
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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

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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, 3 syntheses or guidelines pooled it.

  1. Pooled it
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  3. Pooled it
  4. Article
  5. Review
  6. A Review of Current Ambulatory Assessment Studies in Adolescent Samples and Practical Recommendations.Journal of research on adolescence : the official journal of the Society for Research on Adolescence · 2019
    Review
4 · The record

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5 · Who and what money

Authors and funding

4 authors.

Paula BrayOccupational Therapy Department, The Children's Hospital at Westmead, Locked Bag 4001, Westmead, Sydney, NSW, 2145, Australia. Paula.bray@health.nsw.gov.au.
Anita C BundyDiscipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, NSW, Australia.
Monique M RyanChildren's Neuroscience Centre, Royal Children's Hospital, Melbourne, VIC, Australia.
Kathryn N NorthMurdoch Children's Research Institute, Melbourne, VIC, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

aimTo investigate whether in-the-moment diary reports of daily experience, taken collectively, are a valid representation of health-related quality of life (HRQL).

methodsA total of 35 boys with Duchenne muscular dystrophy (DMD) were recruited through four neuromuscular care providers across Australia. Participants completed the PedsQL™ Generic Core scales and one week of experience-sampling diary reporting on a personal digital assistant. Rasch analysis was undertaken on the diary data to derive a single valid measure score. The resulting measure score for each participant was correlated with the summary score from the PedsQL™ Generic Core scales to examine whether daily experience was representative of HRQL.

resultsThe daily diary method showed good metric properties, with adequate goodness of fit for data from items and participants suggesting unidimensionality of the construct: quality of everyday experience. The correlation of the daily diary measure score with overall PedsQL™ summary score showed moderate agreement (r = .60, p = 0.001).

conclusionsThe benefits of measuring daily quality of life include detailed descriptions of day-to-day experiences of children without the need for retrospective recall. Diary methods on an electronic platform or software application for personal devices may be a useful tool to understand HRQL as the repeated measures data provide a detailed experience directly from the child and the platform makes data completion highly motivating.

Indexed as

Medical RecordsSickness Impact ProfileAdolescentChildHumansMaleMuscular Dystrophy, DuchenneRetrospective StudiesDiary methodsDuchenne muscular dystrophyHealth-related quality of lifeRasch analysis

Identifiers

PMID27812849

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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.