Department of Global Pediatric Medicine, St Jude Children's Research Hospital, Memphis, Tennessee.
Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee.
JAMA Netw Open. 2023 Jan 3;6(1):e2251496. doi: 10.1001/jamanetworkopen.2022.51496.
Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood.
To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America.
DESIGN, SETTING, AND PARTICIPANTS: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America.
The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively.
A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged <35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution (P < .001). The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries.
This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.
早期将儿科姑息治疗（PPC）整合到儿童癌症治疗中对于患者和家庭的生活质量都至关重要。为了在资源有限的环境中改善 PPC 的可及性，必须了解早期整合的障碍。
评估儿童癌症患者 PPC 整合的理想时机与实际时机，并揭示拉丁美洲医生发现的早期整合障碍。
设计、地点和参与者：2020 年 8 月 1 日至 2021 年 1 月 31 日，通过电子方式向 17 个拉丁美洲国家治疗儿童癌症的医生分发了评估医生对姑息治疗态度的问卷调查（ADAPT）。
ADAPT 调查询问了医生对儿童癌症患者 PPC 理想与实际时机的理解，以及识别 PPC 整合障碍。使用描述性统计来总结数据。对于二次分析，使用 Pearson χ2 检验或 Fisher 确切检验比较了有过姑息治疗培训的医生与专科之间的关联。使用 McNemar 检验评估 PPC 咨询的实际与理想时机的应答。使用方差分析比较了按国家收入水平划分的感知障碍的平均值。对开放式问题的答案进行了定性分析。
共有来自 17 个国家的 831 名医生（578 名女性[69.6%]；275 名年龄<35 岁的医生[33.1%]和 556 名年龄≥35 岁的医生[66.9%]）参与了调查，总应答率为 37.9%（2193 名中的 831 名），中位数国家应答率为 51.4%（范围，22.2%-88.9%）。大多数受访者（572 名[68.8%]）表示 PPC 应从诊断开始介入，但只有 117 名（14.1%）表示他们所在机构就是如此（P < .001）。PPC 面临的最重要障碍是缺乏家庭为基础的服务（713 名[85.8%]）、人员（654 名[78.7%]）和对 PPC 的了解（693 名[83.4%]），以及医生（676 名[81.3%]）和家属（603 名[72.6%]）对 PPC 参与的不适。此外，与中高收入国家和高收入国家相比，这些障碍在中低收入国家被认为更为重要。
本研究强调了拉丁美洲儿童癌症患者 PPC 的理想时机与实际时机之间的差异，以及早期 PPC 整合的障碍。解决获取 PPC 资源、教学培训和临床教育（特别关注公平获取基本资源和支持）的干预措施对于改善该地区 PPC 的时机和质量至关重要。
