Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
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DOI：
10.1542/peds.2016-1854
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发表时间：
2016-12-01
期刊：
影响因子：
8
通讯作者：
Lyon, Maureen E.
中科院分区：
文献类型：
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作者：
Dallas, Ronald H.;Kimmel, Allison;Lyon, Maureen E.
背景与目的：小型试点研究支持将患有慢性或限制生命疾病的青少年纳入儿科预先护理计划（pACP）的适当性。我们还不知道，如果pACP是可以接受的，可行的，值得的，即使情绪激烈，在一个充分的动力随机对照trial.METHODS：我们进行了一项前瞻性的2臂随机对照试验在6个美国城市医院。青少年/家庭成员配对被随机分配接受每周1次3次以家庭为中心的预先护理计划（FACE）pACP干预（1，ACP调查; 2，护理对话目标/治疗偏好; 3，完成预先指令）或活性对照药物（1，发育史; 2，安全提示; 3，营养/运动）。满意度调查问卷进行管理，参与者独立后，每届会议由一个盲目的research assistant.RESULTS：我们招募了53%的合格的参与者和干预与97青少年/家庭的二人组。青少年的年龄从14岁到21岁不等; 54%为男性个体; 93%为非洲裔美国人; 73%为围产期感染。在第三次会议上，FACE青少年和家庭二元组成员分别发现会议有用（98%，98%）和有帮助（98%，100%），尽管感到悲伤（25%，17%）。在第3阶段，FACE青少年在总分量表A评分（有用，有帮助，就像卸下了我的负担，满意，我需要做的事情，勇敢，值得）方面的改善优于对照青少年（beta = 1.16，P = 0.02）。没有不良事件。结论：面对使有价值的对话，同时引发强烈的情绪。没有参与者退出，99%的参与者完成了每次治疗，没有不良事件，pACP的可行性，可接受性和安全性的证据。
BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial.METHODS: We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant.RESULTS: We enrolled 53% of eligible participants and intervened with 97 adolescent/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents' improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (beta = 1.16, P = .02). There were no adverse events.CONCLUSIONS: FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP's feasibility, acceptability, and safety.