Bradford Natalie, Herbert Anthony, Mott Christine, Armfield Nigel, Young Jeanine, Smith Anthony
1 Centre for Online Health, University of Queensland , Royal Children's Hospital, Queensland, Australia .
J Palliat Med. 2014 Nov;17(11):1206-13. doi: 10.1089/jpm.2014.0121. Epub 2014 Jul 9.
Pediatric palliative care is a distinct specialty that requires input from pediatric and palliative medicine specialists to provide comprehensive high-quality care. Consultations undertaken early in a child's illness trajectory, when end-of-life care is not anticipated to be required, enables relationships to be established and may enhance the quality of care provided.
To define optimal components of an early pediatric palliative care consultation.
Consensus of an expert group was sought in a five-round Delphi study.
SETTING/PARTICIPANTS: Based on the literature and existing standards for specialist palliative care, components of an early pediatric palliative care consultation were derived. In rounds 2 and 3, experts from around Australia participated in online surveys to review and prioritize the components and principles. Consensus of survey items was determined by defined criteria. A flowchart was developed in the fourth round and the final round involved review and refinement of the flowchart by the expert group.
Nineteen experts participated and prioritized 34 components and principles in the first survey round, and 36 statements in the second survey round. There was consensus from all participants that the first priority of a consultation was to establish rapport with the family, and examples of how to achieve this were defined. Other components of a consultation included: establishing the family's understanding of palliative care; symptom management; an emergency plan; discussion of choices for location of care, and a management plan. Components considered suitable to defer to later consultations, or appropriate to address if initiated by family members, included: spiritual or religious issues; discussion around resuscitation and life-sustaining therapies; end-of-life care; and the dying process.
We have provided the first published framework from expert consensus that defines the components and principles of an early pediatric palliative care consultation. This framework will provide guidance for clinical practice as well as being useful for education and research in this area.
儿科姑息治疗是一个独特的专业领域，需要儿科和姑息医学专家共同参与，以提供全面的高质量护理。在儿童疾病轨迹早期进行会诊，此时预计不需要临终关怀，有助于建立医患关系，并可能提高所提供护理的质量。
确定早期儿科姑息治疗会诊的最佳组成部分。
在一项五轮德尔菲研究中寻求专家小组的共识。
设置/参与者：根据专科姑息治疗的文献和现有标准，得出早期儿科姑息治疗会诊的组成部分。在第二轮和第三轮中，来自澳大利亚各地的专家参与了在线调查，以审查这些组成部分和原则并确定其优先级。调查项目的共识由既定标准确定。在第四轮中制定了一个流程图，最后一轮涉及专家小组对流程图的审查和完善。
19名专家参与了第一轮调查，对34个组成部分和原则进行了优先级排序，在第二轮调查中对36条陈述进行了优先级排序。所有参与者一致认为，会诊的首要任务是与家庭建立融洽关系，并明确了实现这一目标的方法示例。会诊的其他组成部分包括：使家庭了解姑息治疗；症状管理；应急计划；讨论护理地点的选择以及管理计划。被认为适合推迟到以后会诊或如果家庭成员提出则适合解决的组成部分包括：精神或宗教问题；关于复苏和维持生命治疗的讨论；临终关怀；以及死亡过程。
我们提供了首个由专家共识发表的框架，该框架定义了早期儿科姑息治疗会诊的组成部分和原则。该框架将为临床实践提供指导，也有助于该领域的教育和研究。
