Lyon Maureen E, Dallas Ronald H, Garvie Patricia A, Wilkins Megan L, Garcia Ana, Cheng Yao Iris, Wang Jichuan
Center for Translational Science/Children's Research Institute/Children's National Medical Center, Washington, District of Columbia, USA.
Department of Infectious Disease, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
BMJ Support Palliat Care. 2019 Mar;9(1):e22. doi: 10.1136/bmjspcare-2016-001224. Epub 2017 Sep 21.
To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs.
A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised.
Adolescents' mean age was 18 years (range ≥14-<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% ; 85% ;; 71% and 77% . Best timing for end-of-life (EOL) decisions was (38%), (17%), (4%), (8%), (4%) and (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that (PABAK=0.83), and (PABAK=0.92) were very important or important. There was discordance about (PABAK=0.08) and (PABAK=0.32).
Areas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth's EOL wishes.
NCT01289444; Results.
确定感染艾滋病毒青少年患者报告的儿科预立医疗计划（pACP）需求，并检查这些需求与他们家庭认知的一致性。
在六家儿科医院门诊艾滋病毒专科诊所进行横断面调查。参与者包括在一项促进pACP的更大规模研究中的48对青少年/家庭二元组（共96名参与者）。主要结局指标是里昂预立医疗计划调查问卷-青少年版和替代版-修订版。
青少年的平均年龄为18岁（范围≥14 - <21岁）；54%为男性；92%为非裔美国人；27%曾被诊断患有艾滋病。如果面临死亡，92%……；85%……；71%……和77%……。临终（EOL）决策的最佳时机是……（38%）、……（17%）、……（4%）、……（8%）、……（4%）和……（19%）。患病率调整偏差调整卡帕（PABAK）用于衡量青少年/家庭二元组中pACP需求的一致性。在……方面存在高度一致性（PABAK = 0.83），并且在……方面（PABAK = 0.92）非常重要或重要。在……方面存在不一致（PABAK = 0.08）和……方面（PABAK = 0.32）。
不一致的领域与维持生命的选择以及何时进行临终谈话有关。需要有针对性的、以青少年/家庭为中心的、基于证据的pACP干预措施，以提高家庭对青少年临终愿望的理解。
NCT01289444；结果
