Skip to main content Skip to accessibility tools

Incorporating the patient voice in sarcoma research: How can we assess health-related quality of life in this heterogeneous group of patients?

Study ID: 41720
Short Title: Assessing HRQoL in sarcoma patients
Trust Name: UHS
Recruitment Site: Southampton General Hospital
Disease Area: Sarcoma
Phase: N/A
Expected End Date: 31/03/2024
Postcode: SO16 6YD
Contact Name: Amanda Pattie
Contact Email: studysupport1and3.crnwessex@nihr.ac.uk
Active: Yes

A confirmed diagnosis of sarcoma; age 18 years or older; informed consent provided. Although sarcoma is a disease of all ages, we decided to include only those 18 years and older because the EORTC QLQ-C30 is only validated among cancer patients 18 years and older. Age-specific questionnaires are available for those patients under 18 years.

-Having any psychiatric condition or cognitive impairment that would hamper participation in interview/completion of self-reported questionnaires. -Patients who are too ill (death is imminent), as determined by the referring health care professional, will be excluded. -Patients with a GIST diagnosis, who are quite unique in terms of type of disease and treatment. For example, while localised GISTs respond well to surgery, large unresectable or metastatic tumours are resistant to conventional chemotherapy and radiotherapy. -Patients with Kaposi sarcoma, as this disease occurs quite often in people with AIDS -Patients with Carcinosarcoma as this disease is generally seen as a carcinoma

-What is the problem? Although sarcoma patients have higher survival rates with different treatments, they often experience side-effects and psychosocial issues that negatively impact health-related quality of life(HRQoL) during and long after treatment. Therefore, it is important to assess treatment effectiveness both in terms of objective outcomes (survival, recurrence) and in terms of subjective patient reported outcomes including HRQoL. Generic HRQoL instruments are available, but questionnaires capturing all of the unique experiences of sarcoma patients is currently lacking. -What are our aims? To be able to develop a HRQoL instrument specifically for sarcoma-patients, this study aims to provide insight into the relevant HRQoL issues in this patient-group. Furthermore, we will investigate how to design the questionnaires: one list for all sarcoma patients or items based on patient and sarcoma-characteristics. -How will we do this? This study has a mixed method design. In the first phase of this study, semi-structured interviews will be conducted with sarcoma patients and health care professionals about the HRQoL issues that they experience. Subsequently, the respondent will be asked to review the EORTC QLQ-C30 and a site-specific module, if available, for topic and item relevance. These results will be combined with data from previous literature to create an extensive issue-list. In the second phase, we will present the list of HRQoL issues to another group of sarcoma patients and health care professionals and ask them to rate the issues on relevance and to prioritize the 10 most important issues. -What can we learn? The results of this study will help to develop a HRQoL instrument that can be used in future studies to assess not only adverse events and efficacy of new treatments, but also their impact on common functional health problems reported by sarcoma patients.

Study MapList of studies

Your Feedback

Return to header