Abstract 2475
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.
Methods
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.
Results
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.
Conclusions
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.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
UCLH.
Funding
Sarcoma UK. Phase I Stage 1 received additional support from Bone Cancer Research Trust.
Disclosure
All authors have declared no conflicts of interest.
Resources from the same session
4658 - Patient-reported outcomes associated with switching to rivaroxaban for the treatment of venous thromboembolism (VTE) in patients with active cancer
Presenter: Alexander Cohen
Session: Poster Display session 1
Resources:
Abstract
5638 - Incidence of Vascular Thromboembolism Events in Cancer Patients Receiving Immunotherapy: A Single Institution Experience.
Presenter: Laura Gutiérrez Sainz
Session: Poster Display session 1
Resources:
Abstract
5182 - High Incidence of Venous Thromboembolic Events (VTE) in Patients with Diffuse Large B-Cell Lymphoma.
Presenter: Alaa Abufara
Session: Poster Display session 1
Resources:
Abstract
1504 - Weight Loss over Time in Non-Small Cell Lung Cancer: Results from a Landmark Analysis of 800+ Prospectively-Treated Patients
Presenter: Jennifer Le-rademacher
Session: Poster Display session 1
Resources:
Abstract
3972 - The prognostic significance of preoperative nutritional status in resected pancreatic ductal adenocarcinoma (PDAC).
Presenter: Salvatore Paiella
Session: Poster Display session 1
Resources:
Abstract
2313 - Impact of Timing and Technique of Gastrostomy Placement on the Outcome of Patients (pts) with Head and Neck Cancer (HNC)
Presenter: M Julia Lostes Bardaji
Session: Poster Display session 1
Resources:
Abstract
5219 - Clinical & nutritional determinants of quality of life in patients with incurable cancer
Presenter: Louise Daly
Session: Poster Display session 1
Resources:
Abstract
4075 - Loss of skeletal muscle mass during palliative chemotherapy is a poor prognostic factor in patients with advanced gastric cancer
Presenter: In Gyu Hwang
Session: Poster Display session 1
Resources:
Abstract
4159 - Impact of nutritional derangement on treatment outcome in advanced non-small-cell lung cancer (A-NSCLC) patients (pts).
Presenter: Ilaria Trestini
Session: Poster Display session 1
Resources:
Abstract
1210 - Sarcopenia and pretreatment anemia as prognostic factors for patients with localized muscle invasive bladder cancer treated by neoadjuvant chemotherapy and radical cystectomy
Presenter: Emilien Billon
Session: Poster Display session 1
Resources:
Abstract