• Palliative medicine · Dec 2016

    Review

    Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.

    • Lucy H Coombes, Theresa Wiseman, Grace Lucas, Amrit Sangha, and Fliss Em Murtagh.
    • Caroline Menez Research Team, Oak Centre for Children and Young People, The Royal Marsden NHS Foundation Trust, Surrey, UK lucycoombes@nhs.net.
    • Palliat Med. 2016 Dec 1; 30 (10): 935-949.

    BackgroundThe 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.AimTo 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.DesignA systematic literature review and analysis of psychometric properties.Data SourcesPsychInfo, 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.ResultsFrom 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.ConclusionThere 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.© The Author(s) 2016.

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