Abstract
METHODS
A total of 397 patients across 20 solid rare cancer diagnoses, equally divided across the domains of the European Reference Network of Rare Adult Solid Tumours (EURACAN), completed the EORTC QLQ-C30, and where applicable, a tumour-specific questionnaire. Items were rated on a 4-point relevance scale; those with a mean score ≥ 1.5 were considered relevant. Patients selected their ten most relevant items. Those endorsed by ≥ 25% were considered items with the of highest importance.
CONCLUSION
The EORTC QLQ-C30 offers a relevant core assessment for patients with solid rare cancers. Tumour-specific questionnaire applicability varies substantially across diagnoses, highlighting the heterogeneity of HRQoL priorities in this population. Targeted use of validated EORTC Item Library items alongside the QLQ-C30 may offer a flexible and actionable strategy for HRQoL assessment in rare cancer clinical trials and routine care.
RESULTS
All QLQ-C30 items met the relevance threshold (mean ≥1.5) across the full cohort. The most frequently relevant rated items were overall health (37.05%) and quality of life (37.5%), pain (34.0%), pain interfered with daily activities (28.0%), and worry (26.4%). In the top 10, pain (n = 148; 37.3%) and worry (n = 107; 27.0%) were the most often important items. Tumour-specific questionnaires varied in their relevance across domains, ranging from those where most items were relevant (e.g. QLQ-BIL21) to others where only a single item was (e.g. provisional QLQ-VU34).
BACKGROUND
Patients with solid rare cancers often experience impaired health-related quality of life (HRQoL), yet no validated questionnaires exist to fully capture their unique experiences. This study evaluated the relevance of items from generic and tumour-specific European Organisation for Research and Treatment of Cancer (EORTC) questionnaires across this population.