Ripple: Introducing Routine Patient-Reported Quality of Life Assessment into South Australian Pediatric Oncology Practice

Objectives

Health-Related Quality of Life (HRQoL) assessment of children with cancer is not routinely performed in South Australia. Our goal was to co-design and evaluate a digital platform ‘Ripple’ for HRQoL collection and real-time clinical actioning in young patients.

Methods

Study 1 involved platform co-design with children, parents, and multi-disciplinary health professionals. The Ripple platform hosts validated PedsQL Generic Core score patient-reported outcome measures (PROMs) in child self-report and parent-proxy versions for children aged 5-12 years. Study 2 involved a 12-month multi-site hybrid implementation-effectiveness study to test the digital platform's feasibility in South Australian paediatric oncology and radiation oncology services. Children aged 5-12 years receiving treatment or follow-up care, a parent and their healthcare team were invited. Children and parents completed PROMs remotely or in clinic to align with clinical milestones. Clinicians were instantaneously notified of results. Preliminary results from Study 2 are presented.

Results

Study 1 included 20 participants (seven children, four parents and nine clinicians). In Study 2, 65 participants were recruited, including 28 children, 27 parents and 10 healthcare professionals. 54% of children were female and the median age at recruitment was 7 years. Children were diagnosed with a haematological malignancy (n=19), extracranial solid tumour (n=6) or central nervous system tumour (n=3). Compliance of children and parents completing the scheduled PROMs was 100% and 86%, respectively. Seven of nine clinicians had engaged with the PROM results. Of note, six patients required clinical follow-up based on a PROM entry due to emotional functioning responses (n=6), very low total score (n=2) or a significant decline from previous entry (n=2).

Conclusion

Early results show that patient-reported HRQoL assessment using a child-friendly digital platform is feasible in paediatric oncology clinical practice. Further research is needed to investigate whether PedsQL can support psychosocial assessment in this cohort.