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
5135 - Dose adjustment of chemotherapy in aggressive lymphoma using automated and standardized analysis and evaluation of DNA double strand breaks
Presenter: Julia Schröder
Session: Poster Display session 1
Resources:
Abstract
4883 - A New Population Model Validated Pharmacokinetic Similarity of HLX01 and Rituximab in B-Cell Lymphoma
Presenter: Yuankai Shi
Session: Poster Display session 1
Resources:
Abstract
4908 - Efficacy of salvage therapy in the treatment of Helicobacter pylori-positive gastric low-grade mucosa-associated lymphoid tissue lymphoma
Presenter: Sung-Nam Lim
Session: Poster Display session 1
Resources:
Abstract
2360 - Mutational analysis of extranodal marginal zone lymphoma using next generation sequencing
Presenter: Seok Jae Huh
Session: Poster Display session 1
Resources:
Abstract
2430 - Clinical features, treatment and outcomes of colon and rectum mucosa-associated lymphoid tissue (MALT) lymphoma: Literature reviews published in English between 1993 and 2017
Presenter: Jeong Yeon Kim
Session: Poster Display session 1
Resources:
Abstract
4654 - Splenic marginal zone lymphoma: clinical characteristics and prognostic factors in a series of 52 patients
Presenter: Guldane Cengiz Seval
Session: Poster Display session 1
Resources:
Abstract
1732 - Safety and efficacy of Bendamustine and Rituximab (BR) regimen in Indian Chronic Lymphocytic Leukemia patients
Presenter: Ajay Gogia
Session: Poster Display session 1
Resources:
Abstract
5784 - N-terminal B-type natriuretic peptide (NT-proBNP) as an independed prognostic marker for patients with newly diagnosed multiple myeloma complicated by dialysis-dependent renal failure
Presenter: Sergey Semochkin
Session: Poster Display session 1
Resources:
Abstract
836 - The first-line effect of Bortezomib-based Therapy on Clinical Outcomes for Taiwanese Patients with multiple myeloma
Presenter: Ching-Liang Ho
Session: Poster Display session 1
Resources:
Abstract
2085 - Impact of Donor Lymphocyte Infusion in Relapsing Myeloid Neoplasms Post Allogeneic Hematopoietic Stem Cell Transplantation
Presenter: Hanafy Hafez
Session: Poster Display session 1
Resources:
Abstract