PDF(Pubmed)
Abstract：
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.
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.
摘要：
背景：儿科肿瘤学中的电子患者报告结果（e-PRO）可能有助于追踪患者的症状和生活质量（QoL）。然而,在临床环境中的实施是有限的，很少有研究检查儿童和父母对e-PRO使用的看法。
目的：这份简短的报告旨在探讨儿童和父母对使用e-PRO常规报告症状和QoL的益处的看法。
方法：我们分析了PediQUEST反应试验中嵌入的定性数据，一项针对晚期癌症儿童及其父母的早期姑息治疗整合的随机对照试验.研究二元组合，由一个孩子和他们的父母组成，完成为期18周的每周调查，评估症状和QoL，并被邀请参加音频录制的退出面试，以分享研究反馈。访谈笔录用主题分析方法进行了分析，这里报道的紧急主题集中在e-PRO使用的好处上。
结果：总共154名随机参与者，我们收集了代表105名儿童参与者的147名退出访谈.接受采访的儿童（n=47）和父母（n=104）大多是白人和非西班牙裔。关于e-PRO的好处出现了两个主要主题：1)提高对自我和他人经验的反思和意识，2）通过调查提示讨论，增加父母与孩子之间或研究小组与护理团队之间的沟通和联系。
结论：晚期儿科癌症患者及其父母发现在完成常规e-PRO时受益，因为它们促进了更多的反思和认识，并增加了沟通。这些结果可能有助于将e-PRO进一步整合到常规儿科肿瘤护理中。
目的：这份简短的报告旨在探讨儿童和父母对使用e-PRO常规报告症状和QoL的益处的看法。
方法：我们分析了PediQUEST反应试验中嵌入的定性数据，一项针对晚期癌症儿童及其父母的早期姑息治疗整合的随机对照试验.研究二元组合，由一个孩子和他们的父母组成，完成为期18周的每周调查，评估症状和QoL，并被邀请参加音频录制的退出面试，以分享研究反馈。访谈笔录用主题分析方法进行了分析，这里报道的紧急主题集中在e-PRO使用的好处上。
结果：总共154名随机参与者，我们收集了代表105名儿童参与者的147名退出访谈.接受采访的儿童（n=47）和父母（n=104）大多是白人和非西班牙裔。关于e-PRO的好处出现了两个主要主题：1)提高对自我和他人经验的反思和意识，2）通过调查提示讨论，增加父母与孩子之间或研究小组与护理团队之间的沟通和联系。
结论：晚期儿科癌症患者及其父母发现在完成常规e-PRO时受益，因为它们促进了更多的反思和认识，并增加了沟通。这些结果可能有助于将e-PRO进一步整合到常规儿科肿瘤护理中。
