Liberman D B, Song E, Radbill L M, Pham P K, Derrington S F
Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, CA, USA.
Department of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA.
Child Care Health Dev. 2016 May;42(3):439-49. doi: 10.1111/cch.12332. Epub 2016 Mar 29.
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning.
Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility.
Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation.
Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.
患有复杂慢性疾病的儿童可从早期引入姑息治疗服务和进行高级护理计划中受益，以管理症状并支持生活质量和医疗决策。本研究评估了在初级保健预约期间引入姑息治疗是否（1）可行；（2）增加了对姑息治疗的获取并提高了相关知识；（3）促进了高级护理计划。
一项多模式干预的试点研究，包括对初级保健提供者（PCP）的针对性教育、为家庭提供的信息包以及在门诊诊所安排一名姑息治疗团队成员。PCP完成了评估姑息治疗经验、知识和舒适度的前后调查。登记的家庭收到了一个信息包；其中一部分家庭还与一名姑息治疗团队成员见面。鼓励所有家庭预约姑息治疗团队，在此期间团队评估姑息治疗需求和护理目标。研究结束时，研究人员评估了家庭和PCP的满意度，并收集了关于项目可行性的反馈。
招募了20个家庭并收到了信息包；15个家庭与一名姑息治疗团队成员见面。在17个被联系并完成研究后调查的参与家庭中，11个家庭从未听说过姑息治疗，13个家庭不知道有姑息治疗团队存在。大多数家庭认为姑息治疗信息“非常有帮助”且“非常重要”。所有人都愿意向他人推荐姑息治疗团队服务。9个家庭跟进了姑息治疗团队，但没有一个准备好完成高级护理计划。PCP报告称在传达坏消息和进行护理目标讨论方面缺乏培训。然而，他们在向家庭介绍姑息治疗时感觉越来越自在，并支持项目继续开展。
在门诊初级保健环境中启动姑息治疗服务在后勤方面具有挑战性，但增加了患有复杂慢性疾病儿童获得姑息治疗的机会，并提高了PCP对姑息治疗的知识和舒适度。
