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

Cody Z Watling,Tal Schechter,Alexandra Theodorakidis,Hanan Abubeker,Clodagh Mccarthy,L Lee Dupuis,Sadie Cook,Lillian Sung,Emily Vettese

doi:10.1186/s12885-020-07433-9

Abstract

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.

Highlights

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
This study focused on web pages aimed at family members of pediatric patients receiving cancer treatments, including patients without cancer undergoing hematopoietic stem cell transplantation (HSCT)
We focused on describing the development and evaluation of the “Managing Fatigue” and “Preventing Mouth Sores” care recommendations that were based upon CPGs developed by the Pediatric Oncology Group of Ontario [17, 18]

Summary

Introduction

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. Most children who are diagnosed with cancer in high income countries will survive, many will require intensive therapies. The Symptom Screening in Pediatrics Tool (SSPedi) was developed to facilitate symptom screening for children receiving cancer treatment [4,5,6,7] This tool asks children how bothered they are by 15 symptoms either yesterday or today [4]. We previously described the initial development of the SPARK web pages for use by pediatric patients [9, 10]

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