Work

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

Year: 2025

Type: article

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.

Source: BMC Palliative Care

DOI: 10.1186/s12904-025-01887-z

Authors: Tomoo Osumi, Miyuki Yamamoto, Naoko Inaba, Izumi Iikura, Masahiro Ikari, Hirotoshi Maeda

Institutions: National Center For Child Health and Development, University of Tsukuba

Language: English

Topic: Palliative Care and End-of-Life Issues

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,990