Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.
Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.
复制标题
儿科预先护理计划调查：对艾滋病毒/艾滋病青少年与其家人之间的一致性和不一致进行横断面检查。
DOI：
10.1136/bmjspcare-2016-001224
复制
发表时间：
2019
影响因子：
2.7
通讯作者：
AdolescentPalliativeCareConsortium
中科院分区：
文献类型：
--
作者：
Lyon,MaureenE;Dallas,RonaldH;Garvie,PatriciaA;Wilkins,MeganL;Garcia,Ana;Cheng,YaoIris;Wang,Jichuan;AdolescentPalliativeCareConsortium
ObjectivesTo 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.MethodsA 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.ResultsAdolescents’ mean age was 18 years (range ≥14–<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92%believed in completing an advance directive; 85%preferred to die at home;88% knowing how to say good bye; 71%being off machines that extend lifeand 77%dying a natural death. Best timing for end-of-life (EOL) decisions waswhile healthy(38%),when first diagnosed(17%),when first sick from a life-threatening illness(4%),when first hospitalised(8%),if dying(4%) andall of the above(19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in thatbeing free from pain(PABAK=0.83), andunderstanding your treatment choices(PABAK=0.92) were very important or important. There was discordance aboutbeing off machines that extend life(PABAK=0.08) andwhen is the best time to bring up EOL decisions(PABAK=0.32).ConclusionsAreas 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.Trial registration numberNCT01289444; Results.
