Department of Psychosocial Oncology and Palliative Care (A.M., D.F., E.T., I.E., OA, J.W., M.L.R.), Dana-Farber Cancer Institute, Boston, MA, USA.
Pediatric Palliative Care, Department of Pediatrics (M.A., J.W., V.D.), Massachusetts General Hospital, Boston, MA, USA.
J Pain Symptom Manage. 2023 Sep;66(3):e327-e334. doi: 10.1016/j.jpainsymman.2023.05.016. Epub 2023 Jun 6.
Electronic patient-reported outcomes (e-PROs) in pediatric oncology may be useful to track patients' symptoms and quality of life (QoL). However, implementation in the clinical setting is limited and few studies have examined child and parent perspectives on e-PRO usage.
This brief report aims to explore child and parent perspectives on the benefits of using e-PROs to routinely report on symptoms and QoL.
We analyzed qualitative data embedded within the PediQUEST Response trial, a randomized controlled trial aimed at early palliative care integration for children with advanced cancer and their parents. Study dyads, made up of a child and their parent, completed weekly surveys assessing symptoms and QoL for 18 weeks, and were invited to participate in an audio-recorded exit interview to share study feedback. Interview transcripts were analyzed with a thematic analysis approach, with emergent themes centered on the benefits of e-PRO usage reported here.
Of 154 total randomized participants, we collected 147 exit interviews representing 105 child participants. Interviewed children (n=47) and parents (n=104) were mostly White and non-Hispanic. Two predominant themes emerged regarding e-PRO benefits:1) raised reflection and awareness of self and others' experiences, and 2) increased communication and connection between parents and children or between study dyads and care teams through survey prompted discussion.
Advanced pediatric cancer patients and their parents found benefit in completing routine e-PROs as they promoted greater reflection and awareness and increased communication. These results may inform further integration of e-PROs in routine pediatric oncology care.
电子患者报告结局（e-PRO）在儿科肿瘤学中可能有助于跟踪患者的症状和生活质量（QoL）。然而，在临床环境中的实施受到限制，很少有研究探讨儿童和家长对 e-PRO 使用的看法。
本简要报告旨在探讨儿童和家长对使用 e-PRO 常规报告症状和 QoL 的益处的看法。
我们分析了嵌入在 PediQUEST Response 试验中的定性数据，该试验是一项随机对照试验，旨在为晚期癌症儿童及其父母早期纳入姑息治疗。研究对子由一名儿童及其家长组成，他们每周完成一次评估症状和 QoL 的调查，共 18 周，并受邀参加录音的退出访谈以分享研究反馈。采用主题分析方法对访谈记录进行分析，这里报告的新出现的主题集中在使用 e-PRO 的益处上。
在总共 154 名随机参与者中，我们收集了 147 份退出访谈，代表了 105 名儿童参与者。接受访谈的儿童（n=47）和家长（n=104）大多为白人和非西班牙裔。有两个关于 e-PRO 益处的主要主题出现：1）提高对自我和他人经历的反思和认识，2）通过调查提示的讨论增加父母与孩子或研究对子与护理团队之间的沟通和联系。
晚期儿科癌症患者及其家长发现完成常规 e-PRO 有益，因为它们促进了更多的反思和认识，以及增加了沟通。这些结果可能为进一步将 e-PRO 整合到常规儿科肿瘤学护理中提供信息。
