Ripple: Clinical evaluation of a novel digital platform to assess the health-related quality of life of children undergoing cancer treatment

Our research team have co-produced an online platform (website) with children, families and clinicians to streamline how quality of life is assessed to in paediatric oncology clinical practice. An existing data capture platform ‘Ripple’, has been adapted to include quality of life assessment for children with cancer. The study intervention is self-reported and parent-proxy reported health-related quality of life (HRQoL) assessment using a Ripple. Children and parents can choose to login to Ripple using an email link or a QR code. The parent will be required to supply an email to create the account. Upon completion of the first parent-proxy reported HRQoL entry, parents will be prompted to select a password for their account. The primary managing clinician of the child participant and research team will coordinate the ongoing HRQoL assessment schedule for children to align with the child’s treatment and/or follow-up milestones. Participating clinicians will be given access to the HRQoL assessment results of children under their care in the Ripple platform. For children undergoing treatment, the child and parent can expect to complete approximately three to five HRQoL assessments each over the 12 month study period. For children receiving follow up care, the child and parent can expect to complete approximately two quality of life assessments over the 12 month study period. Each HRQoL assessment will take approximately 5-10 minutes to complete at each time point. At recruitment, children and parents will be provided with infographic and text instructions on how to use the Ripple platform. In person assistance to help the child and parent complete the first assessment will be offered by the recruiting healthcare professional or study coordinators. Additional ad hoc support from the clinic champion, study coordinators or healthcare professionals engaged in this study will be available to assist children and parents complete future assessments. Study coordinators and the nominated clinic champion will provide 1hr of formal training for clinicians (either in a single 1hr session or two 30min sessions) prior to using the Ripple platform. After formal training, healthcare professionals will receive physical and online training materials, including orientation for using the Ripple platform and guidance based on available literature regarding interpretation of patient reported outcome results. Additional ad-hoc support for healthcare professionals will be provided by the clinic champion and study coordinators as requested. This study will test the feasibility of using the platform as an additional clinical assessment, to help children convey their HRQoL and to allow the child’s clinicians to use this information as a part of their patient-centred care. In addition to collecting HRQoL assessments, we will use platform analytics and a survey to evaluate how children, parents and healthcare professionals use the platform. No changes to usual treatment or procedures within the existing standards of care will occur for participants. HRQoL assessment using this platform will be an additional supportive care method to accompany existing clinical processes and will not replace any existing clinical care measures. The platform will be used for data capture. It will not provide any educational or support resources.