Health-Related Quality-of-Life Outcome Measures for Pediatric Palliative Care Populations: A Systematic Review

Background: A key goal of palliative care is to improve the quality of life for patients and families living with serious illness. However, valid, and reliable instruments are lacking to assess health-related quality of life (HRQOL) in pediatric palliative care. The objective of this systematic literature review is to update the previous review conducted by Coombes et al. and to explore recent literature and to summarize the measurement properties of identified patient- and parent-reported HRQOL outcome measures for pediatric palliative care appropriate patients. Methods: A systematic review of the literature was conducted by searching EMBASE, Medline, and PsychInfo for recent assessment instruments that measure HRQOL in a life-limiting or life-threatening illness. The psychometric properties of identified measures were evaluated and summarized using COnsensus based Standards for the selection of health Measurement INstruments (COSMIN) guidelines. Results: After removing duplicates, 1,401 records were screened of which 19 manuscripts of 18 studies were retained that supplied information about 12 HRQOL measures. Measurement quality varied across studies. Internal consistency and hypothesis testing for construct validity were most commonly assessed. Most instruments lacked information on measurement invariance, responsiveness, and reliability. Information on measurement error was not available for any instrument. No one instrument was identified as being appropriate for use in a non-disease specific pediatric palliative care population. The PedsQL Epilepsy and QOLCE-55 showed promise for use in children with epilepsy and palliative care needs. Conclusion: There was limited evidence on the psychometric properties of HRQOL instruments in a pediatric palliative care population. Future directions are identified including the need for additional research to test existing or develop new HRQOL outcome measures suitable for use in children and young people with serious and life-threatening illnesses. Patient-reported outcome and experience measures are needed to assess and provide quality care for children and young people with life-limiting illnesses. Generic measures that capture the daily burdens of living with life-limiting illness are needed to compare HRQOL across a variety of diseases and conditions. Public health leadership skills, such as agenda setting, advocacy, and policy promotion, are needed to accelerate the development and implementation of pediatric palliative care HRQOL measures.Master of Public Healt