Adolescent and Young Adult Medicine, Children's National Health System, Washington, DC, USA
Center for Translational Research, Children's National Health System, Washington, DC, USA.
BMJ Support Palliat Care. 2022 Nov;12(e5):e705-e714. doi: 10.1136/bmjspcare-2019-001766. Epub 2019 Jul 25.
To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)).
FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed.
Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial.
FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.
为罕见病儿童的家庭照顾者开发并试点测试姑息治疗干预措施（家庭为中心的儿科预先医疗指令规划-罕见病（FACE-Rare））。
FACE-Rare 的开发涉及一个迭代的、以家庭为导向的过程，包括患者和家庭咨询委员会的审查、半结构化的家庭访谈以及对两种基于证据的以患者为中心的方法的改编和整合，对其进行试点测试。符合条件的家庭被纳入 FACE-Rare（照顾者支持需求评估工具（CSNAT）方法儿科第 1 期和第 2 期；尊重选择下一步的预立医疗照护计划干预第 3 期和第 4 期）。评估了满意度、沟通质量和照顾者评估。
父母的平均年龄为 40 岁，孩子的平均年龄为 7 岁。儿童的疾病罕见到足以描述患者。所有的孩子都依赖于技术。使用了四种中的一种远程医疗技术，这是一种有效的参与策略，减少了对象的负担。家庭发现 FACE-Rare 是有价值的，因为它引出了姑息治疗需求和支持计划。有八户家庭被邀请进行试点测试。在同意参与的七位母亲中，有六位开始了第 1 期，其中 100%完成了：所有的 4 期 FACE-Rare 课程、基线和 2 周后的干预评估，以及一份书面的预立医疗照护计划，描述了他们对与提供者分享医疗决策的偏好。100%的人报告说 FACE-Rare 很有帮助。CSNAT 的前三个关注点是：知道未来会发生什么，有足够的时间留给自己和财务问题。达到了基准，父母对问卷表示满意，因此在更大的试验中是可行的。
FACE-Rare 为临床医生提供了一种创新的、结构化的方法，以提供以患者为中心的护理。
