Department of Pediatrics, University of California San Diego and Rady Children's Hospital, San Diego, California, USA.
Division of Pediatric Hospital Medicine, University of California San Diego and Rady Children's Hospital, San Diego, California, USA.
J Palliat Med. 2022 Feb;25(2):274-281. doi: 10.1089/jpm.2021.0173. Epub 2021 Sep 21.
Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Fifty-six patients were seen through 181 telepalliative visits. Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.
拉迪儿童医院（RCH）开设了一家儿科姑息治疗门诊，该门诊于 2016 年开始提供远程姑息治疗。本研究描述了接受儿科远程姑息治疗的父母的人口统计学特征、患者/家庭对远程姑息治疗的满意度以及患者/家庭的看法。对 RCH（美国圣地亚哥）的远程姑息治疗患者的电子病历图表进行回顾性回顾（2016-2020 年），包括满意度调查。对远程姑息治疗咨询中记录的引语进行了主题分析。通过 181 次远程姑息治疗访问共接待了 56 名患者。其中 43%为女性，32%为西班牙裔/拉丁裔。年龄从 3 个月到 25 岁不等。平均姑息治疗表现量表为 47%。79%的患者使用胃造口管进行营养，但只有 29%的患者使用家庭通风。82%的患者完成了《维持生命治疗医嘱》。84%的患者的治疗目标是延长生命并尝试复苏。每次就诊平均持续 86 分钟。共收回 25 份调查问卷：92%的人感到非常满意，96%的人表示视频就诊与面对面就诊相同、更好或好得多。64%的人表示视频就诊更方便，68%的人认为视频就诊更安全。远程姑息治疗咨询中确定的主题包括为孩子争取权益、围绕照顾有复杂医疗需求的儿童的挑战、医疗团队沟通、照顾者支持、面对不确定性和决策制定。接受远程姑息治疗的儿科患者在人口统计学、功能状态和治疗目标方面存在差异。远程姑息治疗可以提供高质量的护理和患者满意度。在远程姑息治疗环境中，父母能够就包括应对不确定性、寻找支持和决策制定在内的护理难题进行沟通。
