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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.

Dutch title

De stem van de patient laten horen in sarcoom onderzoek: hoe kunnen we de gezondheidsgerelateerde kwaliteit van leven waarborgen bij deze heterogene groep patienten?



Reference code


Intervention model

Cohort study

Full description

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.

Inclusion criteria

  1. Age at diagnosis 18 years or older
  2. Having a confirmed diagnosis of sarcoma

Exclusion criteria

  1. Having any psychiatric condition or cognitive impairment that would hamper participation in interview/completion of self-reported questionnaires.
  2. Patients with a Gastrointestinal Stroma Tumour (GIST) diagnosis, as they are quite unique in terms of type of disease and treatment.
  3. Patients with Kaposi sarcoma, as this disease occurs quite often in people with AIDS
  4. Patients with Carcinosarcoma as this disease is generally seen as a carcinoma