Abstract
BackgroundIn pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC.MethodsWe propose a scoping review following the framework by Arksey and O’Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo.DiscussionThe scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC.Systematic review registrationhttps://osf.io/yfch2/.
Highlights
In pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs
The field of pediatric palliative care (PPC) includes all children and adolescents living with complex lifethreatening or life-shortening conditions
The Preferred Reporting Items of Systematic Reviews extension for Scoping reviews (PRISMA-ScR) checklist will guide the reporting of our scoping review [34]
Summary
In pediatric palliative care (PPC), there is a need to involve the child’s voice in situations regarding their symptoms and care needs. The field of pediatric palliative care (PPC) includes all children and adolescents living with complex lifethreatening or life-shortening conditions. Due to life-sustaining technology of modern medicine, especially in high-income countries, an increasing number of children in PPC become young adults [4]. Children with HIV and congenital malformations represent almost half of the population in need of PPC, followed by children with perinatal conditions, such as extreme prematurity and birth trauma [6]. The latter two constitute the largest groups in Europe, followed by children with neurologic disease and cancer [7]. Most of them have life-limiting conditions, most of these children become young adults, requiring complex care throughout their childhood and onwards [7]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
