ID #876 Survey on decision-making support for children with diffuse intrinsic pontine glioma and their families

Abstract

Diffuse intrinsic pontine glioma (DIPG) is an extremely poor-prognosis pediatric brain tumor, and affected children and their families are required to make numerous complex decisions within a limited time. However, the actual characteristics of decision-making support throughout the disease trajectory have not been sufficiently clarified. This study aimed to elucidate the content of decision-making support and its characteristics by profession and by recipient across different disease phases.

We conducted a retrospective review of medical records of 23 children with DIPG treated at the National Center for Child Health and Development. Decision-making support provided during the initial phase, honeymoon phase, and relapse phase was analyzed by healthcare profession and by recipient (child or family).

Physicians demonstrated the highest level of involvement in decision-making support overall. Nurses, however, were continuously involved across all disease phases, providing phase-specific support such as supplementing explanations of the disease, confirming understanding, and assisting with choices related to daily living. Support for children primarily focused on understanding their condition and selecting aspects of daily life, whereas support for families more frequently addressed treatment decisions and responses to sudden deterioration.

These findings indicate that nurses play a continuous and integral role in decision-making support for children with DIPG and their families throughout the disease trajectory.