The Ingerman Center for Pediatric Palliative Care, The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Palliative Care and Resilience Program, Seattle Children's Research Institute, Seattle, Washington, USA; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
J Pain Symptom Manage. 2019 Nov;58(5):909-917.e3. doi: 10.1016/j.jpainsymman.2019.08.011. Epub 2019 Aug 21.
To dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the U.S. and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.
The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.
The workshop focused on PPC research topics and methods, including outcomes measurement, qualitative inquiry, analyses of big data, prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.
Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research on participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.
These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
为了极大地推动美国及类似实践环境中的儿科舒缓治疗（PPC）干预、实践和项目的证据基础，该领域需要更好地了解严格学术研究的挑战和机遇。
儿科舒缓治疗研究网络举办了一次研讨会，以阐明挑战并确定关键优先事项。
研讨会重点关注 PPC 研究主题和方法，包括结果测量、定性探究、大数据分析、研究数据的前瞻性收集、病例系列和队列研究以及干预试验，并进行了总结和后续讨论。所有与会者都审查并批准了最终报告。
确定了五个常见挑战：患者的多样性和人口规模小；儿童、家庭成员和疾病过程随时间的相互依存和动态相互作用；结果和测量；劳动力和基础设施的局限性；以及对参与者的 PPC 研究的假定负担。出现了七个优先事项：加强 PPC 研究人员的培训和发展；开发核心资源；推进症状测量（以及其他暴露和结果的测量）；改善症状管理和生活质量干预；改善沟通、确定关怀目标和决策；了解家庭影响，并促进或改善家庭适应和应对；以及分析和改善护理、政策和教育系统。
这些挑战和优先事项确定了可以指导个别研究人员和研究资助者推进该领域的关键研究领域。
