Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care
Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care
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DOI：
10.1001/jamanetworkopen.2020.5424
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发表时间：
2020-05-19
影响因子：
13.8
通讯作者：
Lyon, Maureen E.
中科院分区：
文献类型：
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作者：
Friebert, Sarah;Grossoehme, Daniel H.;Lyon, Maureen E.
问题：青少年癌症患者的家人是否知道，如果他们即将死去，他们会想要什么？在这项对80对青少年家庭二人组（160名参与者）的横断面研究中，发现患有癌症的青少年与其家庭之间存在严重的一致性差距。家庭对青少年提出临终决定的最佳时机、自然死亡和即将死亡时停止生命维持系统的偏好了解甚少，但家庭对青少年的关系需求却非常了解。这些发现表明，需要以家庭为中心的儿科提前护理计划干预措施，以缩小家庭对青少年临终治疗偏好的知识差距。缺乏儿科提前护理计划与沟通不良、住院率增加、生活质量差和法律诉讼有关。临床医生假定家庭了解青少年对临终关怀的治疗偏好。目的探讨青少年癌症患者报告的临终价值和需求及其与家人对这些需求的理解的一致性。设计、环境和参与者本横断面调查于2016年7月16日至2019年4月30日在美国4家三级儿科医院的青少年家庭中进行。在一项促进儿科提前护理计划的大型研究中，参与者包括80名青少年家庭二人组（160名参与者）。青少年的资格标准包括年龄在14到21岁之间，会说英语，在任何阶段被诊断出患有癌症，并且知道他们的诊断结果。家庭包括未成年人的法定监护人或18岁或以上的人选择的代理决策者。数据分析时间为2019年4月至2019年11月。以家庭为中心的儿童癌症干预预先护理计划的第1阶段。主要结果和测量主要结果是癌症青少年及其家人在青少年价值观、目标和临终关怀信念方面的一致性。采用流行校正和偏倚校正kappa （PABAK）值来测量里昂预先护理计划调查修订版（患者和替代版本）的一致性。结果在最初的试验中，共有80名青少年家庭二人组（160名参与者）被随机分为干预组。青少年中女性44例（55.0%），白人60例（75.0%），平均（SD）年龄为16.9（1.8）岁。家庭成员中女性66例（82.5%），白人65例（81.3%），平均（SD）年龄45.3岁（8.3）岁。家庭成员对青少年提出临终决定的最佳时间的理解很差：86%的青少年希望尽早（在生病之前，在健康的情况下，在第一次诊断时，在第一次患危及生命的疾病时，或以上所有情况），但只有39%的家庭知道这一点（PABAK, 0.18）。当他们面对自己的死亡时，家庭对青少年重要的事情的理解在从医生那里得到诚实的答案（PABAK, 0.95）和理解治疗选择（PABAK, 0.95）方面是很好的，但在自然死亡（PABAK, 0.18）和离开延长生命的机器（PABAK, 0）方面却很差。许多家庭对青少年的临终关怀价值观理解不足，比如何时开始临终对话，以及是否倾向于停止使用延长生命的机器。儿科提前护理计划可以最大限度地减少这些误解，对护理质量的潜在重大影响。本横断面研究考察了患者报告的癌症青少年的临终价值和需求，以及与他们的家人对这些需求的理解的一致性。
Question Do families of adolescents with cancer know what the adolescent would want if they were dying? Findings In this cross-sectional study of 80 adolescent-family dyads (160 participants), critical congruence gaps were found between adolescents with cancer and their families. Families had a poor understanding of their adolescents' preferences for the best time to bring up end-of-life decisions, dying a natural death, and being off life support if they were dying, but families' understanding of adolescents' relational needs was excellent. Meaning These findings suggest that family-centered pediatric advance care planning interventions are needed to close the gaps in families' knowledge of adolescents' end-of-life treatment preferences.Importance Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participants This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted kappa (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Results A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.This cross-sectional study examines patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs.