Qualitative study of patients’ experiences of living with and beyond a soft tissue sarcoma diagnosis: The impact of sarcoma specialist services

Abstract

Background: Treatment of sarcoma often involves long-term hospitalisation, extensive surgery, loss of mobility and complex rehabilitation programmes. Subsequently, poorer patient-reported outcomes are recorded in comparison to patients with other cancer types. A national patient experience survey shows that enhanced levels of reassurance are obtained by access to trusted quality information about sarcoma. Research also shows that patients are more likely to understand their treatment plan, access services, and cope with their illness if they have professionals supporting care coordination. We aim to explore the role of professional's expertise, practical and emotional support on patients' experiences. Method(s): Participants across the UK were recruited by healthcare teams or through charities to share their experience of living with and beyond a sarcoma diagnosis. Patients took part in a semi-structured interview or focus group. These were analysed using Framework analysis. Result(s): A total of 68 patients with soft tissue sarcoma (STS) participated (59% female; aged 23-82 years; 56% extremity STS; 62% diagnosed within 4 years; 25% with metastatic recurrence). Access to specialist clinical teams had a considerable role in patient's experience; this restored patient's trust in the healthcare profession, especially if their route to diagnosis had been long and complex. They shared receiving trusted quality information from specialists. The clinical nurse specialist (CNS) was described as both an expert and approachable professional who gave them practical and emotional support. It was in the absence of clear communication, coordination or when local rehabilitation services lacked the expertise to support patients that worse experiences were reported. Conclusion(s): This study showed that having access to professionals with sarcoma expertise, quality trusted information, support from a CNS and access to services in specialist hospitals has an impact on patients' physical and emotional wellbeing. In contrast, the lack of access to teams with sarcoma expertise/knowledge had a negative impact on patient's experience. STS is a rare type of cancer and patients benefit from access to specialist services. Legal entity responsible for the study: UCLH. Funding(s): Sarcoma UK. Phase I Stage 1 received additional support from Bone Cancer Research Trust. Disclosure: All authors have declared no conflicts of interest.Copyright © 2019 European Society for Medical Oncology