QLG-RARE
Research type
Research Study
Full title
Health-related quality of life measurement strategy for solid rare cancers
IRAS ID
326595
Contact name
Mieke Van Hemelrijck
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The European Organisation of Research and Treatment of Cancer’s Quality of Life Group (EORTC QLG) develop methods for measuring health-related quality of life (HRQoL) in cancer patients. The QLG's portfolio includes the widely used EORTC QLQ-C30 questionnaire for general HRQoL in cancer; as well as commonly used modules for specific cancers, such as the QLQ-BR45 for breast cancer or the QLQ-CR29 for colorectal cancer.
Rare cancers (normally defined as a cancer diagnosed in fewer than six cases per 100,000 people per year) include a wide variety of different types of cancer, which collectively account for around 22% of all cancer diagnoses worldwide. Patient diagnosed with a rare cancer tend to report poorer psychosocial outcomes and HRQoL compared with the general cancer population, despite the fact that HRQoL in these patients is often measured using generic tools such at the QLQ-C30 or similar measures (e.g. SF-36). Such measure are not designed to adequately assess the HRQoL of patient with rare cancers. Therefore, the present project aims to collect data internationally from interviews with patients with solid rare cancers, to support the design of a strategy to measure HRQoL in solid rare cancer patients.
Developing one HRQoL measure for all solid rare cancers is not a credible approach, because of the differences in cancer types, treatments, and patient experiences between individual patients in this group. The project will hence aim to understand relevant HRQoL issues in this group as a whole but also variances between key groups of solid rare cancers; and based on this analysis, ultimately develop recommendations for the measurement of HRQoL based on existing QLG tools and resources such as question items from existing modules and question items for the QLG's 'Item Library' (as well as the potential formulation of new question items, based on the data collected).
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
23/LO/1011
Date of REC Opinion
23 Jan 2024
REC opinion
Further Information Favourable Opinion