Health-related Quality-of-life Outcome Measures In Paediatric Palliative
Care: A Systematic Review Of Psychometric Properties And Feasibility Of Use

Title

Health-related Quality-of-life Outcome Measures In Paediatric Palliative
Care: A Systematic Review Of Psychometric Properties And Feasibility Of Use

Creator

Coombes LH; Wiseman T; Lucas G; Sangha A; Murtagh FE

Identifier

DOI: 10.1177/0269216316649155

Publisher

Journal Of Palliative Medicine

Date

2016

Subject

Outcome Assessment (healthcare); Child; Pediatrics; Palliative Care; Psychometrics; Quality Of Life

Description

BACKGROUND:
The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care.
AIM:
To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties.
DESIGN:
A systematic literature review and analysis of psychometric properties.
DATA SOURCES:
PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed.
RESULTS:
From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly.
CONCLUSION:
There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

November 2016 List

Citation

Coombes LH; Wiseman T; Lucas G; Sangha A; Murtagh FE, “Health-related Quality-of-life Outcome Measures In Paediatric Palliative
Care: A Systematic Review Of Psychometric Properties And Feasibility Of Use,” Pediatric Palliative Care Library, accessed September 26, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10633.

Social Bookmarking