Journal Article

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

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

2020

Overview

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.

• Publisher: BioMed Central,BioMed Central Ltd,Springer Nature B.V,BMC
• Subject: Adolescent / Adult / Biomedical and Life Sciences / Biomedicine / Cancer / cancer burden and supportive therapy / Cancer patients / Cancer Research / Cancer therapies / Cancer treatment / Care and treatment / Child / Child health / Child, Preschool / Children & youth / Cognitive ability / Education / Evaluation / Evidence-based medicine / Families & family life / Family member / Fatigue / Female / Health Promotion and Disease Prevention / Humans / Infant / Infant, Newborn / Internet / Interviews / Likert scale / Male / Medicine/Public Health / Middle Aged / Mucositis / Neoplasms - therapy / Oncology / Patients / Pediatric cancer / Pediatrics / Practice guidelines (Medicine) / Research Article / Supportive care / Surgical Oncology / Survivorship / Symptom management / Symptom screening / Web site design / Website development / Young Adult / Youth