The complexity of diagnosing sarcoma in a timely manner: perspectives of health professionals, patients, and carers in Australia

Abstract

Background: Prolonged diagnosis intervals occur more often in rare cancers, such as sarcoma. Patients with a delayed diagnosis may require more radical surgery and have a reduced chance of survival. Previous research has focused on quantifying the time taken to achieve a diagnosis without exploring the reasons for potential delays. The aim of this study was to explore patients', carers', and health professionals' perceived barriers to timely diagnosis and referral for treatment for sarcoma. Methods: Semi-structured interviews were conducted with: health professionals working with sarcoma (n = 21); patients who have been diagnosed with sarcoma (n = 22); and carers of patients diagnosed with sarcoma (n = 17). Interview transcripts were analysed using thematic analysis. Results: Four overarching themes were identified: patient perception of symptoms, difficulties of diagnosis, lack of experience, and availability of health services. Diagnosis was prolonged by the limited availability of health services, lack of prompt referrals to a sarcoma specialist centre, and diagnostic challenges. Intervals also occurred when patients underestimated the severity of their symptoms and did not seek prompt medical consultation. Conclusions: Patients with a potential sarcoma need to be promptly referred to a sarcoma specialist centre and additional diagnosis pathways need to be developed to reduce the rate of patients being referred to wrong specialists. Sarcoma education must be embedded in medical courses and professional development curricula. A public health approach should be taken to improve sarcoma knowledge and health seeking behaviours in the community.

“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

“…Pre-diagnosis was a challenging and frustrating time, especially with GPs’ lack of knowledge and awareness of signs and symptoms of sarcoma. This reflects previous work that found delays in diagnosis were common [ 7 ]. Younger patients may be unwilling to present their symptoms and their pain is often misattributed and assumed (by GPs, family members and patients) to be caused by lifestyle [ 13 ].…”

“…Many sarcomas go unnoticed, or are mistaken for other benign conditions, such as soft tissue sporting injuries [ 6 ]. This results in delays in diagnosis, which contribute to patient morbidity [ 7 ], larger tumours and increased likelihood of amputation [ 6 ]. Delayed diagnoses may also lead to greater patient psychological distress and lower treatment adherence [ 7 , 8 ].…”

“…This results in delays in diagnosis, which contribute to patient morbidity [ 7 ], larger tumours and increased likelihood of amputation [ 6 ]. Delayed diagnoses may also lead to greater patient psychological distress and lower treatment adherence [ 7 , 8 ]. This distress related to problems in diagnosis has been found to last up to a year after treatment [ 9 ].…”

Diagnosed with a Rare Cancer: Experiences of Adult Sarcoma Survivors with the Healthcare System—Results from the SURVSARC Study

“…Concerning the experience with the healthcare system, the results from this study show that patients often report that it had cost them much effort to receive the final diagnosis, meaning that from a patient's perspective, there is room for improvement. An Australian qualitative study researching the perspective of sarcoma health professionals and patients on prolonged diagnostic intervals identified the need for better diagnostic pathways, the incorporation of sarcoma education in medical courses, and a public health approach to improve health-seeking behavior [27]. A qualitative study on the diagnostic route in sarcoma, including Dutch and English patients, identified aspects that could be improved, such as better awareness of sarcoma amongst healthcare providers and patients, better patient empowerment, and having a lead clinician [28].…”

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

“…While sarcoma only makes up 1% of all cancer diagnoses, it accounts for 15% of all paediatric cancers 2 . Patients experience prolonged diagnoses and debilitating disease and treatment‐related adverse effects, accounting for significantly poorer health‐related quality of life 3–5 . Treatment involves extensive resections, chemotherapy and radiation therapy 6 .…”