78MO 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

C.S. Padilla; W.T.A. Van Der Graaf; Margot E. T. Tesselaar; Olga Husson

doi:10.1016/j.esmorc.2026.100284

78MO 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

ESMO rare cancers. 2026 Open access

Read full text

Authors: C.S. Padilla, W.T.A. Van Der Graaf, Margot E. T. Tesselaar, Olga Husson

DOI: 10.1016/j.esmorc.2026.100284

Cited by: 0

Abstract

Patients with rare cancers often experience diagnostic uncertainty, limited treatment pathways and psychosocial distress. Existing health-related quality of life (HRQoL) instruments do not fully capture their unique experiences, and only a few are available for specific rare cancers. The EORTC QoL Rare Cancer study aimed to develop an HRQoL measurement strategy for patients with solid rare cancers for use in trials and routine care.

Fields of Study & Subjects

Cancer survivorship and care Health Systems Economic Evaluations Quality of Life Childhood Cancer Survivors' Quality of Life

Publication details

Journal / source: ESMO rare cancers.
Volume: 5
Pages: 100284–100284
Publication date: 1 March 2026
Language: EN