A coordinated multidisciplinary model of care is needed for child and family centered care in pediatric genetic cancer risk services: a scoping review

Abstract

Cancer remains a leading cause of death in children/adolescents. Approximately 8-18% of children/adolescents with cancer have an underlying pediatric Genetic Cancer Risk (p-GCR). P-GCR clinics offer surveillance aimed at improving survival outcomes. Yet children/adolescents require more than surveillance protocols to support holistic health. A multidisciplinary model of care (MoC), including Advanced Practice Nurses (APN) is needed. Yet a MoC and formal description of the APN is lacking in p-GCR clinics. To explore existing evidence of holistic, multidisciplinary approaches to care for children/adolescents and families with a p-GCR; to identify how Advanced Practice Nurses (APN) contribute to care delivery in p-GCR services. A scoping review was conducted in three databases: MEDLINE (Ovid), Embase (Ovid) and CINAHL Complete. JBI methodology for conducting and reporting scoping reviews was used to search MEDLINE, Embase and CINAHL Complete. Gray and white literature was considered from 1991 to 2023. Thirty two studies met inclusion criteria. Thirteen aspects of a MoC in p-GCR were identified including: clinic scope, clinic locality, clinicians involved, care coordination, clinic activity, geography, centralisation of care, psychosocial aspects, shared decision making, education, referrals, transition to adult services and research. There were 10 APN roles described that supported the service/organisation and the delivery of holistic care to children/adolescents with a p-GCR. Using a systematic approach, this review identified how services provide care to children/adolescents with a p-GCR and the APN role in these services. A multidisciplinary MoC with dedicated care coordination can enable child and family centred care with a holistic healthcare approach.

Keywords: Advanced practice nursing; Cancer predisposition; Child and family centred care; Pediatrics.

Fig. 1

PRISMA diagram

Fig. 2

Pediatric Genetic Cancer Risk Clinic: Model of Care. p-GCR = pediatric genetic cancer risk, HCP = healthcare professionals

Fig. 3

Level of evidence of included articled based on Bittner 2014

Fig. 4

p-GCR types described in clinics. NF1 = neurofibromatosis Type 1; NF2 = neurofibromatosis Type 2; TSC = Tubular Sclerosis Syndrome; FAP = Familial Adenomatous Polyposis; MEN2 = Multiple Endocrine Neoplasia type 2, PJS-Peutz-Jeghers Syndrome; LFS = Li Fraumeni Syndrome; VHL = von Hippel Lindau disease

Fig. 6

Advanced Practice Nurse (APN) responsibilities identified

Fig. 5

Clinicians involved in pediatric Genetic Cancer Risk clinics