Rare cancers, defined as those with an incidence of fewer than six cases per 100,000 people per year, account for approximately 24% of all cancer diagnoses [1,2]. They are known to be extremely heterogeneous and appear in different parts of the body. This diversity, combined with their rarity, means many patients are managed outside specialised centres, contributing to delays and variability in care. Despite their collective impact, rare cancers often receive less research attention than more common malignancies, leaving patients with limited treatment guidelines, fewer clinical trials, and geographical disparities in expertise [5].
Among rare cancers, sarcomas represent only 1% of adult tumours, with 4-5 cases per 100,000 people per year in Europe [1,3,4]. Sarcomas are a heterogeneous group of over 70 histological subtypes arising in bone and soft tissue, which complicates accurate diagnosis and standardised treatment.
Health-related quality of life (HRQoL) is a crucial aspect of cancer care, yet research on HRQoL in rare solid cancers and sarcomas remains limited. Given the unique challenges these patients face—late diagnosis, limited treatment options, and small, dispersed populations—understanding their HRQoL is essential for improving care and support strategies. Our research addresses this gap by evaluating how HRQoL is assessed in these populations, developing more tailored measurement approaches, and investigating challenges in their diagnostic trajectories.
Throughout this work, we collaborate closely with the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group to ensure robust methodologies and meaningful patient-centred outcomes.
References
-
Weidema, M.E., et al., Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: a global patient-driven Facebook study in a very rare malignancy. Acta Oncol, 2020. 59(8): p. 975-982.
-
Franzoi, I.G., et al., The psychological impact of sarcoma on affected patients. Psychooncology, 2023. 32(12): p. 1787-1797.
-
Stiller, C.A., et al., Descriptive epidemiology of sarcomas in Europe: report from the RARECARE project. Eur J Cancer, 2013. 49(3): p. 684-95.
-
Holthuis, E.I., et al., Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials? JCO Clin Cancer Inform, 2024. 8: p. e2400054.
-
Padilla, C.S., et al., Health-Related Quality of Life (HRQoL) Assessments in Research on Patients with Adult Rare Solid Cancers: A State-of-the-Art Review. Cancers (Basel), 2025. 17(3).