Introduction: Delays in diagnosis can occur for any cancer; however, in rare cancers, such as sarcoma, delays occur more often. Little research has been conducted in Australia about delays in diagnosing sarcoma. The aim of this study were to: determine patients’ and family carers’ perspectives of diagnosis; explore perceived barriers/ enablers to timely diagnosis and referral for treatment; and explore health professionals’ perspectives about the diagnosis and referral process.
Methods: Semi-structured interviews were conducted with health professionals, patients, and carers. Interviews were transcribed verbatim and thematic analysis was undertaken to identify the key themes relating to diagnosis.
Results: To date, 18 interviews have been conducted with health professionals, patients and carers. Sarcoma was identified as a rare cancer requiring different management based on initial presentation. The four main themes were: misdiagnosis; symptoms unnoticed; site of tumour; and the wide age range of patients. Delays from patients occurred when they misattributed their symptoms e.g., to a sporting injury or growing pain; did not notice their symptoms; or were reluctant to share their symptoms with a health professional or family member. Health professionals reported delayed diagnoses occurred due to misdiagnosis; referrals to the wrong services; and long wait times for testing. Early detection by patients and health professionals often resulted in direct referral and diagnosis through the State Sarcoma Service. Conversely, others waited before presenting their symptoms to a health professional and experienced delays when they were sent for inconclusive testing from a variety of health professionals prior to referral for appropriate management.
Conclusion: The diagnosis of sarcoma was often delayed because patients and health professionals lacked experience and knowledge about sarcoma. There is a need to educate the community and health professionals about sarcoma symptoms, variations, age demographics, and the role of the State Sarcoma Service in WA.