Incorporating the Patient Voice in Sarcoma Research: How Can we Assess Health-related Quality of Life in This Heterogeneous Group of Patients?
Last updated: March 20, 2022
Although the clinical effectiveness of sarcoma treatment has improved, treatment side-effects may often detract form the overall marginal advantage. The aim of this study is to raise the standard of health-related quality of life.
De stem van de patient laten horen in sarcoom onderzoek: hoe kunnen we de gezondheidsgerelateerde kwaliteit van leven waarborgen bij deze heterogene groep patienten?
EORTC QOL STBSG study VOICE
The investigators will follow the EORTC QLG questionnaire development guidelines. First, a computerized search of the academic literature will be performed to identify all relevant HRQoL issues for and existing HRQoL questionnaires currently used among patients with sarcoma. In parallel, semi-structured interviews will be conducted worldwide with patients with sarcoma(N=179) and health care professionals (HCPs; N=35; phase 1a). The patient sample will be stratified to capture diversity across the sarcoma population tumour location (extremities, axial, head and neck, thorax, retroperitoneal/intra-abdominal and gynecological), stage (localized vs. metastatic disease ) and type or lines of treatment.
This list of HRQoL issues generated by the a) literature search, b) relevant items from the Item Library, and c) semi-structured patient and HCP interviews, and will be consolidated into a comprehensive list of issues for all languages of collaborating countries.
In phase 1b, the new list of HRQoL issues will be presented to another group of patients with sarcoma(N=475) and HCPs (N=72). Patients and HCPs will be asked to rate the HRQoL issues on relevance (4point Likert scale) and to prioritize the 10 most important issues.
- Age at diagnosis 18 years or older
- Having a confirmed diagnosis of sarcoma
- Having any psychiatric condition or cognitive impairment that would hamper participation in interview/completion of self-reported questionnaires.
- Patients with a Gastrointestinal Stroma Tumour (GIST) diagnosis, as they are quite unique in terms of type of disease and treatment.
- 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