Transitional Care in Pediatric Brain Tumor Patients: A Systematic Literature Review

Abstract

Background: Due to advances in the treatment of pediatric brain tumors (PBT), an increasing number of patients are experiencing the transition from the pediatric to the adult health care system. This requires efficient transitional models. Methods: We systematically reviewed the literature regarding PBT concerning different transitional models and aspects of the transitional period. For this purpose, PubMed, Medline, and Embase databases were searched systematically through January 2022. Results: We reviewed a total of 304 studies, of which 15 were ultimately included. We identified five transition models described within the literature, while the most frequently mentioned ones were the “adult caregiver model” (45.5%), “joint caregiver model” (45.5%), “continued caregiver model” (27.3%), and the “specialized clinic model” (27.3%). During the transition, the most frequent challenges mentioned by the patients were the lack of knowledge about the disease by the adult health care professionals (62.5%) and the difficulty of establishing a new relationship with the new physician, environment, or hospital (37.5%). Conclusions: An efficient transitional model is mandatory for patients with PBT. Continuity in the treatment and care of the patient and their family is essential. For this purpose, in patients with PBT, the “continued caregiver model”, and for NF1 and TSC patients, the “specialized clinic model” seems optimal to offer continuity of care. If such models are unavailable, efficient communication with patients, families, and specialists in a multidisciplinary network is even more critical.

Keywords

• pediatric brain tumor
• neurofibromatosis type 1
• tuberous sclerosis complex
• transitional care
• pediatric neurosurgery
• pediatric neurology