Bringing crucial follow-up care online
Improving the quality of life for children who are recovering from cancer and the side effects of cancer treatment is the focus of a new project being funded by The Hospital Research Foundation (THRF) Group.
Childhood cancer is the most heartbreaking of all diseases. Encouragingly though, survival rates are increasing, meaning the follow-up care on a patient’s wellbeing is just as important as the clinical care in managing their overall health.
That’s where Dr Michala Short comes in – researcher and senior lecturer in radiation therapy at the University of SA Cancer Research Institute. Her new project aims to enhance routine follow-up care by bringing quality of life assessment into the digital world to better engage with young cancer survivors and meet their ongoing needs.
With THRF Group funding, Dr Short and her collaborators will develop an engaging, age-appropriate and inclusive online tool that assesses how survivors are feeling emotionally at home, school and within their communities, and give feedback to their clinicians in real time.
“We’ve found that this really is the missing piece in best practice care for children with a solid cancer, to help them communicate how their cancer and its treatment has impacted on them and on their quality of life,” Dr Short said.
“Children don’t necessarily volunteer how they’re going in their personal lives as they don’t want to worry anyone, it’s only when we ask them that we find areas we can help with.
“Children are very digitally literate these days, so an online tool really is the best approach to make this area of care appealing to them. We hope that by tailoring it to their age group – pre-primary, junior and upper primary – it will inspire and motivate them to look at this area of their lives, be empowered in their survivorship journey and not be put off by a tedious paper questionnaire.”
Dr Short will be partnering with children, families and clinicians at RAH to develop the tool with the aim of embedding it within standard radiation oncology follow-up care.
“The very generous funding from THRF Group will help us source the technical expertise we need to deliver an online tool that is compatible across all devices and very user-friendly; with the hope to monitor long-term trends in children’s wellbeing as well.
“Survivorship begins at diagnosis and continues right throughout their whole life; and some side effects don’t appear for many years after treatment. With an online tool, clinicians will be able to provide the right advice and referrals in a much more timely manner.”
Thank you to our donors, fundraisers and ticket buyers in The Hospital Research Foundation Home Lottery for making this project possible. We look forward to keeping you updated.