Pediatric Advanced Care Team, The Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
Department of Biomedical and Health Informatics, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
J Pain Symptom Manage. 2021 Sep;62(3):593-598. doi: 10.1016/j.jpainsymman.2021.01.007. Epub 2021 Jan 22.
The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance."
Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item.
One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6).
Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
儿科舒缓治疗（PPC）领域不断面临挑战和机遇，以改善获得高质量 PPC 服务的机会。2019 年初，一个研讨会确定了 11 项潜在的“下一步”行动，随后对 PPC 社区成员进行了一项基于全国调查的民意调查，以根据其“可操作性重要性”对这些潜在行动进行优先排序。
2019 年 10 月，通过电子邮件向儿科学会姑息治疗分会和姑息治疗中心的两个主要邮件列表发送了调查邀请，邀请跨学科 PPC 医疗保健专业人员参加调查。受访者通过离散选择实验相互比较评估项目的“可操作性重要性”。报告了每个项目的中位数重要性得分。
177 人对调查做出了回应。大多数人（62.2%）是医生，其次是护士（16.4%）、高级执业护士（7.9%）和社会工作者（7.3%）。潜在行动的前五项，按降序排列，分别是：确定父母对 PPC 的重视程度（中位数为 17.8，总分为 100）；定义和传播核心初级 PPC 课程（中位数，15.3）；制定 PPC 国家代表战略和策略（中位数，12.3）；创建 PPC 特定的方案开发工具包（中位数，10.9）；分析支付和融资比例（中位数，9.6）。
那些希望推动 PPC 领域发展的人应该考虑到这项研究的结果，这些结果表明，某些行动更有可能对推动该领域向前发展产生有益影响。
