Program in Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, 686 Bay Street, Toronto, Ontario, Canada.
Canadian Cancer Society, 55 St Clair St W., Toronto, Ontario, Canada.
BMC Cancer. 2020 Sep 25;20(1):923. doi: 10.1186/s12885-020-07433-9.
Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web-based application that facilitates symptom screening and access to supportive care clinical practice guidelines (CPGs) for children and adolescents receiving cancer treatments. Objective was to develop SPARK family member web pages for pediatric patient family members accessing: (1) proxy symptom screening and symptom reports, and (2) care recommendations for symptom management based on CPGs.
SPARK family member web pages were developed and included access to symptom screening and care recommendations sections. Care recommendations for fatigue and mucositis were created. These were iteratively refined based upon cognitive interviews with English-speaking family members ≥16 years of age until less than two participants incorrectly understood sections as adjudicated by two independent raters.
A total of 100 family members were enrolled who evaluated the SPARK family member web pages (n = 40), fatigue care recommendation (n = 30) and mucositis prevention care recommendation (n = 30). Among the last 10 participants, none said that the SPARK family member web pages were hard or very hard to use, one incorrectly understood one web page, none said either care recommendation was hard to understand and none were incorrect in their understanding of the care recommendations.
We successfully developed SPARK web pages for use by family members of pediatric patients receiving cancer treatments. We also developed a process for translating CPG recommendations designed for healthcare professionals to lay language. The utility of SPARK family member web pages after clinical implementation could be a focus for future research.
支持性护理优先排序、评估和推荐系统（Supportive Care Prioritization, Assessment and Recommendations for Kids，简称 SPARK）是一个基于网络的应用程序，它可以方便地对儿童和青少年癌症治疗患者进行症状筛查，并获取支持性护理临床实践指南（CPGs）。其目的是为使用 SPARK 的儿科患者家属开发网页，包括：（1）代理症状筛查和症状报告，以及（2）根据 CPG 提供的症状管理护理建议。
开发了 SPARK 家属网页，包括访问症状筛查和护理建议部分。为疲劳和黏膜炎制定了护理建议。根据对年龄在 16 岁及以上的英语为母语的家属进行的认知访谈，对这些建议进行了迭代细化，直到不到两名参与者在两名独立评估者的裁决下错误地理解了这些部分。
共纳入 100 名家属，他们评估了 SPARK 家属网页（n=40）、疲劳护理建议（n=30）和预防黏膜炎护理建议（n=30）。在最后 10 名参与者中，没有人表示 SPARK 家属网页难以或非常难以使用，有 1 人错误地理解了一个网页，没有人表示任何护理建议难以理解，也没有人对护理建议的理解有误。
我们成功地为接受癌症治疗的儿科患者家属开发了 SPARK 网页。我们还开发了一个将专为医疗保健专业人员设计的 CPG 建议转化为通俗易懂语言的流程。SPARK 家属网页在临床实施后的实用性可能是未来研究的重点。
