Influence of health interventions on quality of life in seriously ill children at the end of life

BACKGROUND: Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children.

METHODS: A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols.

DISCUSSION: As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.

SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018105109.