Online Resources Fail to Meet Needs of Sarcoma Patients and Their Families, Study Finds
A new study reveals a critical gap in online support for individuals diagnosed with sarcoma, a rare cancer disproportionately impacting teenagers and young adults, and their caregivers.
Sarcoma, a complex cancer affecting the body’s connective tissues – including bone, muscle, fat, nerves, and blood vessels – accounts for roughly 1% of adult cancers but a significant 15% to 20% of cancers in children. Due to its rarity and the specialized care often required, reliable online information is paramount for patients and families navigating this challenging diagnosis. However, research led by Dr. Chloe Maxwell-Smith from the Curtin School of Population Health indicates that existing online resources are significantly lacking in crucial areas.
The research team conducted a comprehensive review of sarcoma websites globally, finding that while most adequately explain the basics of the disease – its diagnosis and common treatments – they fall short in addressing the day-to-day needs of those affected. The findings, published December 9, 2025, in the journal Psycho-Oncology under the title “SUN-SHINE Sarcoma Systematic Environmental Scan: Evaluation of the Readability, Understandability, and Actionability of Websites Supporting Patients Diagnosed with Sarcoma and Their Caregivers,” highlight a concerning deficiency in support systems.
“The areas we found lacking included emotional support, practical guidance, age-specific information, and dedicated resources for caregivers,” explained Dr. Maxwell-Smith. “This is especially important given that sarcoma often affects children, teenagers, and young adults who face unique life disruption.”
The study underscores a critical disconnect in how health information is presented to those living with a rare cancer. According to Dr. Maxwell-Smith, “Sarcoma patients often feel isolated because their cancer is not well known, even within the health system.” Many undergo extensive surgery, lengthy rehabilitation, or life-altering treatment at a young age, requiring clear, accessible, and practical guidance – not overly complex information that is difficult to decipher.
Researchers found that most websites offer limited information about the lived experience of sarcoma, and rarely acknowledge the distinct needs of children, teenagers, or young adults. Critically, no websites were dedicated solely to supporting caregivers, despite their essential role in the treatment process and the significant emotional burden they carry.
“People need step-by-step guidance, practical checklists, psychosocial support, and clearer pathways to specialist sarcoma services,” Dr. Maxwell-Smith emphasized. The lack of caregiver-focused resources is particularly troubling given the complexity of sarcoma treatment and the substantial support families provide.
The findings from this study will directly inform the development of more inclusive, accessible, and instructional online resources for sarcoma patients across Australia. This initiative aims to bridge the existing gap and provide vital support to those navigating this challenging disease.
More information:
Chloé Maxwell‐Smith et al, SUN‐SHINE Sarcoma Systematic Environmental Scan: Evaluation of the Readability, Understandability, and Actionability of Websites Supporting Patients Diagnosed With Sarcoma and Their Caregivers, Psycho-Oncology (2025). DOI: 10.1002/pon.70349.
Provided by
Curtin University.
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