Abstract
BackgroundSeriously 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.MethodsA 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.DiscussionAs 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 registrationPROSPERO CRD42018105109
Highlights
Ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication
To our knowledge, no systematic review of studies has yet been conducted that looks into the influence of health interventions on quality of life at the end of life in seriously ill children
This systematic review will add to the construction of a reliable and valid evidence base to be utilized in children’s end-of-life research and in health care policy to improve quality of life and care
Summary
Concepts and definitions For the purpose of the present study, the following definitions will be used: (1) quality of life is defined as all measures or proxies of quality of life, care, or dying at the end of life, containing six domains (physical health, psychological health, independence level, social relations, environment, spirituality/religion/personal beliefs [26]); (2) a health intervention is any “act performed for, with or on behalf of a person or population whose purpose is to assess, improve, maintain, promote or modify health, functioning or health conditions” [27] which includes decisions about treatment, place of care, place of death, etc.; (3) seriously ill children are defined as people, who are suffering from a progressive lifethreatening disorder, excluding acutely ill children at the end of life, i.e., those whose illness is due to trauma, suicide, or other unforeseen complications not related to a syndrome or illness; and (4) end of life is the period preceding the death of the child during the last months, weeks, or days. The following data will be extracted by one researcher, with a 20% sample reviewed by another researcher: title; authors; date of publication (month, day); year of publication; journal; country (where data collection took place); aim/research question(s) (as stated in the study); start and end of intervention or exposure (in days before death); duration of intervention (in days); setting (where health intervention took place); population; participants (who + number); children’s age (mean, median, range, and/or interquartile range (IQR)); children’s age group (0–1, 1–5, 6–9, 10–14, 15–17, 18+); children’s illness (as stated in the study); children’s illness category (cancer, neurological disorder, or other); language of article; definition of end of life; indications of end of life throughout the article; reported health intervention(s) and quality of life; measurement of the health intervention; measurement of quality of life (proxy); definer of quality of life (proxy); study design; quality score based on the QualSyst tool (as described below); reported influence of health intervention; availability of separate results for target age group; and availability of separate results for children at the end-oflife stage. In case no meta-analysis is possible, a narrative synthesis will be done, in which we will include a discussion of relevant factrs such as age, disease group, and definers of quality of life
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