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| Home > Publications database > A health-related quality of life measurement strategy for solid rare cancers: Primary findings from the EORTC Quality of Life Group (QLG) QoL Rare Cancer Study. |
| Home > Publications database > A health-related quality of life measurement strategy for solid rare cancers: Primary findings from the EORTC Quality of Life Group (QLG) QoL Rare Cancer Study. |
| Journal Article | DKFZ-2026-02697 |
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2026
Elsevier
Amsterdam [u.a.]
Abstract: 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.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.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).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.
Keyword(s): EORTC ; EORTC QLQ-C30 ; Generic Questionnaire ; Health-Related Quality of Life ; Measurement Strategy ; Solid Rare Cancer ; Tumour-specific Questionnaire
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