Development of the SPARK family member web pages to improve symptom management for pediatric patients receiving cancer treatments

BMC Cancer

Alexandra Theodorakidis¹  Clodagh McCarthy²  Tal Schechter³  Lillian Sung⁴  Sadie Cook⁵  Emily Vettese⁵  Hanan Abubeker⁵  Cody Z. Watling⁵  L. Lee Dupuis⁶ 

[1] AboutKidsHealth, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada;Canadian Cancer Society, 55 St Clair St W., Toronto, Ontario, Canada;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;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;Division of Haematology/Oncology, Department of Paediatrics, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada;Program in Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, 686 Bay Street, Toronto, Ontario, Canada;Research Institute and Department of Pharmacy, The Hospital for Sick Children, Leslie Dan Faculty of Pharmacy, University of Toronto, 555 University Avenue, Toronto, Ontario, Canada;

关键词: Pediatric cancer;    Supportive care;    Website development;    Family member;    Symptom screening;    Education;   

DOI  :  10.1186/s12885-020-07433-9

来源: Springer

【 摘 要 】

BackgroundSupportive 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.MethodsSPARK 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.ResultsA 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.ConclusionsWe 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.

【 授权许可】

CC BY