Evidence map›Paper›PMID 26453575›Full record

Trial reportArchives of disease in childhood2015

What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM.

Roxanne Parslow, Aarti Patel, Lucy Beasant, Kirstie Haywood, Debbie Johnson, Esther Crawley

Abstract readClinical Trial
PubMed Full text at PMC Publisher
In one paragraph

Trial report in Archives of disease in childhood, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
27citing papers in PubMed, 3 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

27 citing papers in PubMed, 3 syntheses or guidelines pooled it.

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  15. Measuring outcomes in rotator cuff disorders.Journal of clinical orthopaedics and trauma · 2021
    Article
  16. What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021
    Review
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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

6 authors.

Roxanne ParslowCentre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
Aarti PatelPsychology Department, University of Bath, Bath, UK.
Lucy BeasantCentre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
Kirstie HaywoodRoyal College of Nursing Research Institute, Warwick Medical School, University of Warwick, Coventry, UK.
Debbie JohnsonCentre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
Esther CrawleyCentre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.

Funding

Department of Health CS/08/08/06
6 · The paper itself

Abstract

backgroundPaediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME.

aimThe aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME.

methodsTwenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8-17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way.

resultsChildren identified four key themes (health outcome domains): 'symptoms' that fluctuated, which caused an unpredictable reduction in both 'physical activity' and 'social participation' all of which impacted on 'emotional well-being'. These domains were influenced by both 'management' and 'contextual factors', which could be positive and negative. The relationship between healthcare and school was considered pivotal.

conclusionsChildren's descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME. TRIAL REGISTRATION NUMBER: ISRCTN81456207.

Indexed as

AdolescentChildEnglandFatigue Syndrome, ChronicFemaleFollow-Up StudiesHumansMaleMotor ActivityOutcome Assessment, Health CareQualitative ResearchQuality of LifeSocial ParticipationchildrenChronic Fatigue SyndromeMyalgic EncephalomyelitisPatient Reported Outcomequalitative

Identifiers

PMID26453575
PMCPMC4680202

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Registered trials

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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.