title: Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.
abstract: 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.
  
  
  
  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.
  
  
  
  A systematic literature review and analysis of psychometric properties.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Caroline Menez Research Team, Oak Centre for Children and Young People, The Royal Marsden NHS Foundation Trust, Surrey, UK lucycoombes@nhs.net.
authors.forename: Lucy H
authors.initials: LH
authors.lastname: Coombes
authors.affiliation: Applied Health Research Team, The Royal Marsden NHS Foundation Trust, London, UK.|Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Theresa
authors.initials: T
authors.lastname: Wiseman
authors.affiliation: Applied Health Research Team, The Royal Marsden NHS Foundation Trust, London, UK.
authors.forename: Grace
authors.initials: G
authors.lastname: Lucas
authors.affiliation: Applied Health Research Team, The Royal Marsden NHS Foundation Trust, London, UK.
authors.forename: Amrit
authors.initials: A
authors.lastname: Sangha
authors.affiliation: Department of Palliative Care, Policy & Rehabilitation, Faculty of Life Sciences and Medicine, Cicely Saunders Institute, King's College London, London, UK.
authors.forename: Fliss Em
authors.initials: FE
authors.lastname: Murtagh
mesh_terms: D002648:Child; D006801:Humans; D017063:Outcome Assessment, Health Care; D010166:Palliative Care; D011594:Psychometrics; D011788:Quality of Life
keywords: Outcome assessment (healthcare); child; paediatrics; palliative care; psychometrics; quality of life