Health Related Quality of Life Outcome Measures for Use in Paediatric Palliative Care:A Systematic Literature Review of Psychometric Properties and Feasibilty of Use

Background: The number of children worldwide requiring palliative careservices is increasing due to advances in medical care and technology. Theuse of outcome measures is important to improve the quality andeffectiveness of care.Aim: To systematically identify health related quality of life (HRQOL)outcome measures that could be used in paediatric palliative care (PPC)and examine their feasibility of use and psychometric properties.Design: A systematic literature review and analysis of psychometricproperties.Data sources: PsychInfo, Medline and EMBASE were searched from 1January 1990 to 10 December 2014. Hand searches of the reference list ofincluded studies and relevant reviews were also performed.Results: From 3460 articles, 125 papers were selected for full textassessment. 41 articles met the eligibility criteria and examined thepsychometric properties of 22 HRQOL measures. Evidence was limited asat least half of the information on psychometric properties per instrumentwas missing. Measurement error was not analysed in any of the includedarticles and responsiveness was only analysed in one study. Themethodological quality of included studies varied greatly