Development of the SPARK family member web pages to improve symptom management for pediatric patients receiving cancer t
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RESEARCH ARTICLE
Open Access
Development of the SPARK family member web pages to improve symptom management for pediatric patients receiving cancer treatments Cody Z. Watling1, Clodagh McCarthy2, Alexandra Theodorakidis3, Sadie Cook1, Emily Vettese1, Tal Schechter4, Hanan Abubeker1, L. Lee Dupuis5 and Lillian Sung4,6*
Abstract Background: 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. Methods: 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. Results: 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. Conclusions: 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. Keywords: Pediatric cancer, Supportive care, Website development, Family member, Symptom screening, Education
* Correspondence: [email protected] 4 Department of Pediatrics, Division of Haematology/Oncology, The Hospital of Sick Children and Faculty of Medicine, University of Toronto, 555 University Avenue, Toronto, Ontario, Canada 6 Division of Haematology/Oncology, Department of Paediatrics, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party
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