Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them:a systematic scoping review

Background: In planning high quality research in any aspect of care for children and young people with life-limiting conditions it is important to prioritise resources in the most appropriate areas. Aim: To map research priorities identified from existing research prioritisation exercises relevant to infants, children, and young people with life-limiting conditions, in order to inform future research. Design: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. Data sources: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, -threatening or -shortening conditions; their family, parents, carers; and/or the professional staff caring for them. Results: Twenty four research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by WHO classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. Conclusions: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families’ perspectives.