Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison.
adolescent health
occupational therapy
Journal
Archives of disease in childhood
ISSN: 1468-2044
Titre abrégé: Arch Dis Child
Pays: England
ID NLM: 0372434
Informations de publication
Date de publication:
11 2021
11 2021
Historique:
received:
08
07
2020
revised:
11
01
2021
accepted:
12
02
2021
pubmed:
14
4
2021
medline:
19
11
2021
entrez:
13
4
2021
Statut:
ppublish
Résumé
Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery. This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover. Twelve papers (10 studies) were identified, involving 826 patients (range 23-135). Recovery rates were highly varied, ranging between 4.5% and 83%.Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery. Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child's own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.
Sections du résumé
BACKGROUND
Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery.
METHODS
This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover.
RESULTS
Twelve papers (10 studies) were identified, involving 826 patients (range 23-135). Recovery rates were highly varied, ranging between 4.5% and 83%.Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery.
IMPLICATIONS
Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child's own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.
Identifiants
pubmed: 33846138
pii: archdischild-2020-320196
doi: 10.1136/archdischild-2020-320196
pmc: PMC8543221
doi:
Types de publication
Comparative Study
Journal Article
Research Support, Non-U.S. Gov't
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
1087-1094Subventions
Organisme : Department of Health
ID : SRF-2013-06-013
Pays : United Kingdom
Informations de copyright
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ.
Déclaration de conflit d'intérêts
Competing interests: EMC is an unpaid medical advisor to The Sussex & Kent ME Society. EMC, one of the authors of this systematic review, was also an author of one of the included papers. However, to avoid a conflict of interest, EMC was not involved in the final study selection or data extraction.
Références
Pediatrics. 2013 Jun;131(6):e1788-95
pubmed: 23669515
Arch Dis Child. 2015 Dec;100(12):1141-7
pubmed: 26453575
Lancet. 2012 Apr 14;379(9824):1412-8
pubmed: 22385683
Psychol Med. 2010 Aug;40(8):1269-79
pubmed: 19891804
J Patient Rep Outcomes. 2019 Nov 9;3(1):67
pubmed: 31707635
Lancet. 2011 Mar 5;377(9768):823-36
pubmed: 21334061
Arch Dis Child. 2010 Apr;95(4):245-9
pubmed: 19843509
Clin Child Psychol Psychiatry. 2018 Jul;23(3):398-408
pubmed: 29096528
Psychother Psychosom. 2007;76(3):171-6
pubmed: 17426416
QJM. 1997 Mar;90(3):223-33
pubmed: 9093600
J Adv Nurs. 2008 Dec;64(6):564-73
pubmed: 19120569
Behav Res Ther. 2012 Nov;50(11):719-25
pubmed: 22985998
BMJ Open. 2011 Dec 12;1(2):e000252
pubmed: 22155938
BMJ. 2005 Jan 1;330(7481):14
pubmed: 15585538
J Paediatr Child Health. 2002 Jun;38(3):295-9
pubmed: 12047700
Pediatrics. 2011 May;127(5):e1169-75
pubmed: 21502228
BMJ Paediatr Open. 2019 Dec 2;3(1):e000525
pubmed: 32500105
Arch Dis Child. 2004 Jul;89(7):615-9
pubmed: 15210489
Arch Dis Child. 2002 Feb;86(2):95-7
pubmed: 11827901
Ann Intern Med. 1994 Dec 15;121(12):953-9
pubmed: 7978722
J R Soc Med. 2000 Mar;93(3):129-34
pubmed: 10741312
Arch Pediatr Adolesc Med. 2010 Sep;164(9):810-4
pubmed: 20819962
Arch Dis Child. 2005 Apr;90(4):367-8
pubmed: 15781924
Qual Life Res. 2014 Nov;23(9):2407-16
pubmed: 24791749
J R Soc Med. 1991 Feb;84(2):118-21
pubmed: 1999813
Pediatrics. 2009 Jul;124(1):189-93
pubmed: 19564299