Sarcoma surveillance: the patient experience and impact on QoL
Research type
Research Study
Full title
The patient experience and impact on quality of life of post-operative radiological sarcoma surveillance and surveillance intensity following primary resection of a retroperitoneal, abdominal, or pelvic soft tissue sarcoma.
IRAS ID
326635
Contact name
Danielle Maes
Contact email
Sponsor organisation
University of Birmingham - Research Ethics, Governance and Integrity
Duration of Study in the UK
0 years, 6 months, 30 days
Research summary
Retroperitoneal (back of the abdomen), abdominal, and pelvic sarcomas (cancers of connective tissue) are malignant tumours. Sarcomas are generally treated with surgery alone, followed by a follow-up plan that includes regular clinic visits and scans (surveillance) to check the sarcoma has not grown back or spread to other parts of the body. The impact of surveillance and surveillance frequency on quality of life and long-term survival is unknown. In addition, information regarding patients’ and clinicians’ experience of surveillance and their attitudes towards surveillance and different surveillance frequencies is lacking. Surveillance can cause significant anxiety, termed “scanxiety”, and disruption of daily life for patients.
This qualitative study, using one-time, individual semi-structured interviews, will focus on patients who underwent surgical treatment for a retroperitoneal, abdominal, or pelvic soft tissue sarcoma (RPS) within the University Hospitals Birmingham NHS Foundation Trust, as well as clinicians regularly involved in the direct or indirect care for patients with a RPS at the University Hospitals Birmingham NHS Foundation Trust.
The interviews will explore patients’ lived experience of sarcoma surveillance and patients’ quality of life related to surveillance, the effect of high frequency compared to lower frequency surveillance on patients’ quality of life, and patients’ acceptance with regards to different radiological surveillance frequencies. In addition, clinicians’ attitudes towards sarcoma surveillance and their views with regards to how sarcoma surveillance impacts on patients’ quality of life will be explored. This study will take place between June and December 2023 at the University Hospitals Birmingham NHS Foundation Trust.
This information will help clinicians and policy makers to make meaningful changes to the surveillance strategy to potentially improve patients’ quality of life and the quality of care patients receive and reduce anxiety and distress suffered by patients.
REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
23/NW/0255
Date of REC Opinion
5 Oct 2023
REC opinion
Further Information Favourable Opinion