Lyon Maureen E, D'Angelo Lawrence J, Dallas Ronald H, Hinds Pamela S, Garvie Patricia A, Wilkins Megan L, Garcia Ana, Briggs Linda, Flynn Patricia M, Rana Sohail R, Cheng Yao Iris, Wang Jichuan
a Department of Pediatrics , Children's National, Children's Research Institute, Center for Translational Science and George Washington University School of Medicine and Health Sciences , Washington , USA.
b Department of Pediatrics, Children's National, Division of Adolescent & Young Adult Medicine , George Washington University School of Medicine and Health Sciences , Washington , USA.
AIDS Care. 2017 Oct;29(10):1287-1296. doi: 10.1080/09540121.2017.1308463. Epub 2017 Mar 30.
The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
本研究的目的是纵向确定儿科预先护理计划（pACP）是否能提高青少年/家庭在临终（EOL）治疗偏好上的一致性。14至21岁的感染艾滋病毒/艾滋病的青少年及其家庭被随机分组（N = 105对），参加为期三周、每周一次、每次60分钟的课程：要么是pACP干预（独立进行调查，在青少年和家人在场的情况下促进对话，在青少年和家人在场的情况下完成法律预先指示文件），要么是积极对照（发育史、安全提示、营养和运动教育）。这项纵向、单盲、多中心、随机对照试验在位于艾滋病高死亡率城市的六家儿科医院的艾滋病毒诊所进行。治疗偏好声明在pACP促进对话后立即（第2阶段）以及干预后3个月时测量青少年/家庭在临终治疗偏好上的一致性。青少年参与者的平均年龄为18岁（范围14至21岁）；54%为男性；93%为非裔美国人。三分之一的人被诊断患有艾滋病。干预后立即，患病率调整偏差调整卡方显示，与对照组相比，pACP组在治疗偏好上有显著的一致性（高负担/低生存机会，PABAK = 0.688对0.335；功能障碍，PABAK = 0.687对PABAK = 0.34；精神障碍，PABKA = 0.717对0.341）。干预组中同意限制治疗的比例高于对照组（高负担：14.6%对0%；功能障碍 = 22.9%对4.4%；精神障碍：12.5%对4.4%）。pACP组干预后立即总体治疗偏好一致性较高，但随时间下降。相比之下，对照组的治疗一致性较低且随时间保持较低水平。由于随着实际经历护理目标随时间变化，需要进行额外的pACP对话。
