Managing diffuse intrinsic Pontine glioma (DIPG) through japan's pediatric home medical care (PHMC) system, originally designed for medically complex children.

Abstract

Background: Diffuse Intrinsic Pontine Glioma (DIPG) is one of the most aggressive and fatal pediatric brain tumors, with limited treatment options and a survival of less than two years. Therefore, palliative care plays a crucial role throughout the disease trajectory, yet home-based data remain scarce, particularly for pediatric patients. This study aims to describe the implementation of a pediatric home medical care system (PHMC) in Japan for children with DIPG, focusing on symptom management, care delivery patterns, and quality of life.

Methods: We conducted a retrospective cohort study of 22 children with DIPG who received PHMC services from a single clinic in Tokyo between 2017 and 2024. Data were extracted from detailed medical records kept by physicians during home visits. We examined demographics, disease progression, end-of-life symptoms, medications (opioids, steroids), respiratory support, nutritional care, and frequency of home visits.

Results: The average age at diagnosis was 7.9 years, with a mean overall survival of 14.2 months. Most children (91%) died at home. Major end-of-life symptoms included dysphagia, paralysis, respiratory distress, and convulsions. Steroids and morphine were the primary agents used for symptom relief. High Flow Nasal Cannula (HFNC) was used in 59% of cases. The physicians' visiting frequency increased significantly toward the terminal phase, with a maximum of 14 visits per month. Many children continued to attend school or engage in outings until shortly before death.

Conclusions: The Japanese PHMC system, with physicians' home visiting, enabled comprehensive, hospital-level palliative care at home for children with DIPG. This model may serve as a framework for enhancing pediatric end-of-life care, especially where direct physician involvement is feasible. Our findings suggest the importance of structured, multidisciplinary home care systems in maintaining quality of life for children with terminal conditions.