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
3245 - BCR-ABL transcript variant’s significance in chronic myeloid leukemia in chronic phase: Institutional experience from a developing country
Presenter: Siva Prasad
Session: Poster Display session 1
Resources:
Abstract
2831 - Interleukin-6 as a Predictive Marker for Early Response to Induction Chemotherapy in Acute Myeloblastic Leukaemia
Presenter: Salah Khallaf
Session: Poster Display session 1
Resources:
Abstract
6014 - Impact of FLT3-ITD mutation on post-transplant outcome of adult AML is modified by the concomitant NPM1 mutation and pre-transplant remission status: A report from Taiwan Bone Marrow Transplant Registry (TBMTR)
Presenter: Su-peng Yeh
Session: Poster Display session 1
Resources:
Abstract
2914 - Efficacy endpoints studied in clinical trials for early-onset leukaemia
Presenter: Dylan Said
Session: Poster Display session 1
Resources:
Abstract
4691 - High triglyceride is a major risk factor of DIC and differentiation syndrome in acute promyelocytic leukemia
Presenter: Tomohiro Yamakawa
Session: Poster Display session 1
Resources:
Abstract
4395 - DREAMM 4: A Phase I/II single-arm open-label study to explore safety and clinical activity of belantamab mafodotin (GSK2857916) administered in combination with pembrolizumab in patients with relapsed/refractory multiple myeloma (RRMM)
Presenter: Suzanne Trudel
Session: Poster Display session 1
Resources:
Abstract
2808 - A Phase 1 Study of HMPL-523, a Selective Oral Anti-Spleen Tyrosine Kinase Inhibitor, in Patients with Relapsed or Refractory Lymphoma
Presenter: Nathan Fowler
Session: Poster Display session 1
Resources:
Abstract
4403 - A Phase 1 Study of HMPL-689, a Selective Oral Phosphoinositide 3-Kinase-Delta Inhibitor, in Patients with Relapsed or Refractory Lymphoma
Presenter: Jonathon Cohen
Session: Poster Display session 1
Resources:
Abstract
3357 - A global patient-driven Facebook study in a very rare sarcoma: Health-related quality of life in Epithelioid Hemangioendothelioma (EHE) patients
Presenter: Marije Weidema
Session: Poster Display session 1
Resources:
Abstract
2640 - Health-related quality of life issues of patients affected by desmoid-type fibromatosis; experiences from two countries
Presenter: Milea Timbergen
Session: Poster Display session 1
Resources:
Abstract