Abstract 131TiP
Background
Rare cancers are characterized by fewer than six cases per 100,000 people/year. Health-related quality of life (HRQoL) is a multidimensional concept that covers the patient's perception of how their illness and treatment affect their daily ability to function physically, mentally and socially. Solid rare cancer patients report lower HRQoL and more healthcare problems than the common cancer patient population. For rare cancer patients, only a limited number of questionnaires exist. HRQoL in rare cancer patients is often assessed with generic tools (e.g. EORTC-QLQ-C30). Developing one HRQoL measure for all rare cancers will be impossible due to the heterogeneity of tumours and treatments; therefore, alternative ways to measure rare cancer patients' experiences are being sought. This study aims to identify HRQoL issues that solid rare cancer patients face and develop an HRQoL measurement strategy that can be used in future research and clinical practice.
Trial Design
This international, multicentre study will use a mixed methods design. To cover the current knowledge on rare cancers, we will use EURACAN domains. Two systematic literature reviews will be written according to the PRISMA guideline to identify: (1) currently used HRQoL measures in clinical research and (2) issues rare cancer patients experience within the healthcare system. Patients and healthcare professionals (HCP) will review existing EORTC questionnaires for importance and relevance (to be scored on a 4-point Likert relevance scale) via interviews. We will test the content validity of stand-alone healthcare-related EORTC measures and tumour-specific modules. A stratification matrix will ensure heterogeneity of patients and HCP is represented. In total, 500 patients and 150 HCPs will be recruited. Data will be analysed using basic quantitative analyses, including descriptive statistics. Issues with a low mean score (e.g. < 1.5) for relevance or importance will be excluded. An issue will be included when more than 25% of patients mention the issue as missing in the questionnaire.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The Netherlands Cancer Institute.
Funding
European Organisation for Research and Treatment of Cancer - Quality of Life Group (EORTC-QLG).
Disclosure
All authors have declared no conflicts of interest.