Ideal Timing and Perceived Barriers for Palliative Care Integration for Children with Cancer in China.

Abstract

Pediatric palliative care (PPC) for children with cancer can improve the quality of life for patients and their families, but barriers impede the early integration of PPC for many patients. This study aims to investigate the current status of PPC integration for children with cancer in China, identify discrepancies between the ideal and actual timing of PPC implementation, and highlight physician-perceived barriers to PPC integration. The assessing doctors' attitudes on palliative treatment (ADAPT) survey was recently translated into Chinese and thoroughly validated. The survey was distributed to physicians caring for children with cancer across 25 Chinese provinces. The response rate was 98.4%. Descriptive statistics were used to summarize the findings. A qualitative analysis was used for open-ended responses. Data from 368 physician responses were included in the final analysis. Most participants (83.2%) stated that the actual timing of PPC consultation for children with cancer in their center occurs at the end of life. Most participants (70.4%) also stated that PPC consultation should ideally occur at diagnosis, but only 121 (32.9%) reported this happening in their current practice (P < 0.001). The most frequently identified barriers included limited access to palliative care specialists or services (79.9%), lack of palliative care positions in tertiary hospitals (75.5%), and lack of home-based services (73.4%). This study reveals a significant gap between the ideal and actual timing of PPC consultations, with most consultations occurring at the end of life or when curative options are exhausted rather than early after diagnosis. The findings also highlight the perceived barriers of limited access to specialists and home-based services, providing a focus for further intervention and capacity enhancement within China.