Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.
Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop.
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DOI：
10.1016/j.jpainsymman.2019.08.011
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发表时间：
2019-11
影响因子：
4.7
通讯作者：
Wolfe J
中科院分区：
文献类型：
--
作者：
Feudtner C;Rosenberg AR;Boss RD;Wiener L;Lyon ME;Hinds PS;Bluebond-Langner M;Wolfe J
为了在美国和类似的实践环境中显著推进儿科姑息治疗(PPC)干预、实践和计划的证据基础，该领域需要更好地了解严格学术研究的挑战和机遇。儿科姑息治疗研究网络举办了一次研讨会，以澄清挑战和确定关键优先事项。讲习班侧重于方案支助方案的研究主题和方法，包括成果衡量、定性调查、大数据分析、研究数据的预期收集、案例系列和队列研究以及干预试验，并进行综合总结和后续讨论。所有与会者审阅并批准了最终报告。确定了五个共同的挑战：患者多样性和人口规模小；随着时间的推移，儿童、家庭成员和疾病过程之间的相互依赖和动态相互作用；结果和测量；劳动力和基础设施限制；以及PPC研究对参与者的推定负担。出现了七个优先事项：加强PPC调查员的培训和发展；开发核心资源；推进症状衡量(以及对其他暴露和结果的衡量)；改善症状管理和生活质量干预；改善沟通、引发护理目标和决策；了解家庭影响，促进或改善家庭适应和应对；以及分析和改进护理、政策和教育系统。这些挑战和优先事项确定了可以指导个人研究人员和研究资助者推进该领域的关键研究领域。
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.
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