A new Curtin University study has found people diagnosed with sarcoma – a cancer disproportionately affecting teenagers and young adults – are being left without the resources they urgently need.
Sarcoma is a rare and complex cancer in the body’s connective tissues such as bone, muscle, fat, nerves and blood vessels. While it only accounts for around one per cent of adult cancers, it makes up 15 to 20 per cent of childhood cancers.
Due to its rarity and complexity, sarcoma care is often delivered in specialist centres, making reliable online information especially important – however the study, led by Dr Chloe Maxwell-Smith from the Curtin School of Population Health, found many online resources significantly lacking.
The research reviewed sarcoma websites from across the world and found while most adequately explained what sarcoma is, how it is diagnosed and common treatments, Dr Maxwell-Smith said they fell well short in areas that matter most to patients and families in day-to-day life.
“The areas we found lacking included emotional support, practical guidance, age-specific information and dedicated resources for caregivers,” Dr Maxwell-Smith said.
“This is especially important given that sarcoma often affects children, teenagers and young adults who face unique life disruption.”
Dr Maxwell-Smith said the findings highlighted a critical gap in how health information is presented and tailored for people living with a rare cancer.
“Sarcoma patients often feel isolated because their cancer is not well known, even within the health system,” Dr Maxwell-Smith said.
“Many patients undergo major surgery, long rehabilitation or life-altering treatment at a young age.
“They and their caregivers need clear, accessible and practical guidance – not dense, overly complex information that’s difficult to understand.”
The study found most sarcoma websites had little-to-no information clearly explaining what a person with sarcoma may experience and rarely acknowledged the different needs of children, teenagers or young adults, nor their caregivers, who play an essential support role.
While patient information could be relevant to caregivers, Dr Maxwell-Smith said they found no caregiver-focused websites at all, which was a major concern given the complexity of sarcoma treatment and the emotional load carried by families.
“People need step-by-step guidance, practical checklists, psychosocial support and clearer pathways to specialist sarcoma services,” Dr Maxwell-Smith said.
The SUN-SHINE Sarcoma Project, a collaboration between Sock it to Sarcoma!, Cooper Rice-Brading Foundation and Curtin University led by Professor Georgia Halkett, supported the study.
The findings will help the Project develop more inclusive, accessible and instructional online resources for people living with sarcoma across Australia.
This project is funded through Cancer Australia’s Supporting people with Cancer Grant initiative and is recruiting people to provide feedback on the website resources it is developing.
SUN-SHINE Sarcoma Systematic Environmental Scan: Evaluation of the Readability, Understandability, and Actionability of Websites Supporting Patients Diagnosed with Sarcoma and Their Caregivers was published in Psycho-Oncology.
