Using Patients and Their Caregivers Feedback to Develop ENABLE CHF-PC: An Early Palliative Care Intervention for Advanced Heart Failure
Using Patients and Their Caregivers Feedback to Develop ENABLE CHF-PC: An Early Palliative Care Intervention for Advanced Heart Failure
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DOI：
10.1177/0825859718785231
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发表时间：
2019-04-01
影响因子：
1.7
通讯作者：
Bakitas, Marie A.
中科院分区：
文献类型：
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作者：
Akyar, Imatullah;Dionne-Odom, J. Nicholas;Bakitas, Marie A.
目的：缺乏对纽约心脏协会（NYHA）III/IV级心力衰竭患者及其家人进行早期、基于社区的姑息治疗的模式。我们利用医学研究理事会制定复杂干预措施的过程进行形成性评估研究，以将早期姑息治疗干预措施从癌症转化为心力衰竭。方法：父母形成性评价试点研究的一个组成部分是对8名患者-护理人员二人组参与者进行定性满意度访谈，这些参与者完成了教育，养育，建议，生命结束前患者和护理人员的全面心脏护理（ENABLE CHF-PC）干预。ENABLE CHF-PC包括亲自姑息治疗评估、每周远程医疗辅导课程和每月随访。在完成辅导课程后，对患者和护理人员参与者进行了访谈，以了解他们使用ENABLE CHF-PC的经验。数字记录的采访进行了转录和分析使用的主题方法。结果如下：患者（n = 8）平均年龄为67.3岁，62.5%为女性，75%已婚/与伴侣生活;护理人员（n = 8）平均年龄为56.8岁，87.5%为女性。与ENABLE CHF-PC体验相关的四个主题包括“让我发泄”，“获得视角”，“帮助我计划”和“获得疾病管理和决策技能”。“干预修改的建议包括（1）在诊断时启动程序，（2）保持基于电话的方法，（3）扩展主题并修改格式。结论：患者和照顾者一致认为干预是有益的和可接受的。经过修改后，ENABLE CHF-PC目前正在一项大型随机对照试验中进行疗效测试。
Objective: Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. Method: One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient-caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. Results: Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included "allowed me to vent," "gained perspective," "helped me plan," and "gained illness management and decision-making skills." Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. Conclusion: Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.