Working in collaboration with young people and health professionals. A staged approach to the implementation of a randomised controlled trial

Abstract

ASyMS© is an Advanced Symptom Management System utilising mobile phone technology to monitor chemotherapy-related symptoms and promote self-care. It was first developed with an adult cancer population and is now being evaluated with young people through an iterative development process. ASyMS© involves patients recording and sending symptom reports to the hospital and receiving tailored self-care advice. Health professionals are alerted when severe symptoms are reported. Three phases of the ASyMS©-YG (young people) study are complete. Phase 1 involved young people identifying the symptoms to be assessed. Phase 2 involved young people testing the symptom report system, and ascertaining young people’s, parents’ and professionals’ perceptions of ASyMS©-YG. This paper reports on Phase 3, in which the system was developed further in preparation for a randomised controlled trial (RCT). Health professionals devised an alert system based on risk modelling side-effect severity, and young people and professionals developed self-care advice. A pilot study was conducted to test the alert system and study design in readiness for a definitive RCT. The contribution young people and professionals have made to this project is invaluable in evaluating the practical effectiveness of ASyMS©-YG and ensuring the intervention is acceptable and works in everyday practice.