Data Sheet 1_Criteria for unmet need in paediatric populations and their families: a literature-based case study in haematological malignancies in upper-middle and high-income countries.pdf

IntroductionUnmet health-related needs (UHNs) in paediatric populations are often under-researched due to methodological challenges. Yet, understanding these UHNs is essential to improve health outcomes and quality of life for children. Importantly, their families also bear a substantial burden throughout the disease trajectory. This study (i) identifies UHN criteria specific to children and families, (ii) compare them with criteria included in the KCE NEED framework, and (iii) maps the methodological tools used to assess these needs.
MethodsA scoping review was conducted following JBI methodology and reported using PRISMA-ScR. Selection of sources of evidence was conducted double-blind. UHNs were thematically analysed across health, healthcare and social domains, focusing on children with haematologic malignancies as a representative population. Studies were solely included if conducted in upper-middle and high-income countries.
ResultsThe review (n = 34) identified 17 UHN criteria experienced by children or their families. The criteria varied by child's age: in older groups UHNs related to treatment adherence, age-dependent information and involvement, and future perspectives, while across all ages, challenges with educational continuity, mental health, social interactions, forgone care and autonomy were mentioned. UHN for families relate to family and financial stability, mental health, social interactions, information needs, care organization, and privacy. Specific to siblings, parental attention was identified. A total of 14 tools were identified, comprising 8 tools to assess patients’ UHNs, and 6 on their families’ UHNs.
DiscussionThe multifaceted nature of UHNs in children with haematologic malignancies and their families calls for a holistic, age-appropriate approach to care. These findings may be extrapolated to broader paediatric populations, highlighting the need for age-dependent communication, sustained educational support, and comprehensive family-centred care.
Systematic Review Registrationhttps://osf.io/xfqyw/overview.