Haslinger Family Pediatric Palliative Care Center, Akron Children's Hospital, Akron, Ohio.
Rebecca D. Considine Research Institute, Akron Children's Hospital, Akron, Ohio.
JAMA Netw Open. 2020 May 1;3(5):e205424. doi: 10.1001/jamanetworkopen.2020.5424.
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.
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.
Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention.
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 κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions).
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).
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.
缺乏儿科预先护理计划与沟通不畅、住院增加、生活质量下降和法律诉讼有关。临床医生推测，家庭了解青少年对临终关怀的治疗偏好。
检查癌症青少年的患者报告的临终价值观和需求，以及他们与家庭对这些需求的理解是否一致。
设计、地点和参与者：这是一项横断面调查，于 2016 年 7 月 16 日至 2019 年 4 月 30 日在 4 家美国三级儿科护理医院进行，参与者包括来自更大规模的促进儿科预先护理计划的研究中的 80 个青少年-家庭对（160 名参与者）。青少年的入选标准包括年龄在 14 至 21 岁之间、英语流利、患有任何阶段的癌症以及知晓自己的诊断。家庭包括未成年的法定监护人或年满 18 岁的患者选择的替代决策人。数据分析于 2019 年 4 月至 2019 年 11 月进行。
青少年癌症家庭中心儿科预先护理计划的第 1 部分，共 3 部分。
主要结果是癌症青少年与其家庭之间关于青少年对临终关怀的价值观、目标和信念的一致性。使用里昂预先护理计划调查修订版（患者和代理人版本）的调整后流行率和偏差的 κ（PABAK）值来衡量一致性。
共有 80 对青少年-家庭被随机分配到原始试验中的干预组。在青少年中，44 名（55.0%）为女性，60 名（75.0%）为白人，平均（SD）年龄为 16.9（1.8）岁。在家庭成员中，66 名（82.5%）为女性，65 名（81.3%）为白人，平均（SD）年龄为 45.3（8.3）岁。家庭成员对青少年对最佳时间提出临终决策的信念的理解很差：86%的青少年希望尽早进行（在生病之前、保持健康时、首次确诊时、首次因危及生命的疾病而生病时或上述所有时间），但只有 39%的家庭知道这一点（PABAK，0.18）。当涉及到自己的死亡时，家庭对青少年重要的事情的理解非常好，他们希望从医生那里得到诚实的答案（PABAK，0.95），并理解治疗选择（PABAK，0.95），但对自然死亡（PABAK，0.18）和机器死亡的理解很差。）如果死亡（PABAK，0）。
许多家庭对青少年对自己临终关怀的价值观存在严重误解，例如何时开始临终对话以及是否希望停止使用延长生命的机器。儿科预先护理计划可以通过减少这些误解，对护理质量产生重大影响。
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