ArticleBMC palliative care2025
Managing diffuse intrinsic Pontine glioma (DIPG) through japan's pediatric home medical care (PHMC) system, originally designed for medically complex children.
Article in BMC palliative care, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundDiffuse 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.
methodsWe 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.
resultsThe 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.
conclusionsThe 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.
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