Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use
Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use
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.
1-15
Coombes, L.H.
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Wiseman, T.
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Lucas, G.
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Sangha, A.
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Murtagh, F.E.
0509c053-a0b8-41f8-b64d-ee799ec4ea3c
Coombes, L.H.
8fd24e63-5c3e-4742-bef4-05d8ded8a97a
Wiseman, T.
e3ff42ae-97ef-4640-af3d-40eeae830df9
Lucas, G.
d92b8bcc-2e32-442a-bc3b-a52ee33c1007
Sangha, A.
2d57f4a9-b065-4756-aade-5975bc69f438
Murtagh, F.E.
0509c053-a0b8-41f8-b64d-ee799ec4ea3c
Coombes, L.H., Wiseman, T., Lucas, G., Sangha, A. and Murtagh, F.E.
(2016)
Health-related quality-of-life outcome measures in paediatric palliative care: a systematic review of psychometric properties and feasibility of use.
Palliative Medicine, .
(doi:10.1177/0269216316649155).
(PMID:27247087)
Abstract
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.
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Accepted/In Press date: 1 May 2016
e-pub ahead of print date: 31 May 2016
Organisations:
Faculty of Health Sciences
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Local EPrints ID: 397101
URI: http://eprints.soton.ac.uk/id/eprint/397101
ISSN: 0269-2163
PURE UUID: ef0bb6ba-dcc0-4324-b609-95607cf43f45
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Date deposited: 27 Jun 2016 15:19
Last modified: 15 Mar 2024 01:05
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Contributors
Author:
L.H. Coombes
Author:
T. Wiseman
Author:
G. Lucas
Author:
A. Sangha
Author:
F.E. Murtagh
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