Socioeconomic disparities in sarcoma diagnosis, expert center access, and advocacy group awareness: a multicenter study in Southern Europe.

Abstract

Background: Management of sarcoma in expert centers (SECs) improves outcomes, and patient advocacy groups provide information, support, and representation of patients' needs; however, access to both remains uneven. We aimed to identify factors associated with patient referral and advocacy group awareness in Spain and Portugal, 2 universal healthcare systems with distinct sarcoma pathways.

Materials and methods: Between April and December 2023, we conducted a survey-based study of adults with sarcoma under active treatment or follow-up across 9 Spanish hospitals (5 SECs) and one Portuguese hospital. Sociodemographic and clinical data, referral patterns, and advocacy group awareness/contact were analyzed.

Results: A total of 415 patients were included (Spain, n = 365; Portugal, n = 50). In Spain, lower income (odds ratio [OR] 2.38; 95% CI, 1.16-5.03) was associated with longer diagnostic delays. Rural residence (OR 3.48; 1.79-7.04) and longer diagnostic delays (OR 2.41; 1.26-4.66) were associated with referral to other hospitals. Cancer advocacy group awareness was lower among patients with lower income (OR 0.38; 0.17-0.81) and higher with longer diagnostic delays (OR 2.08; 1.05-4.25). Sarcoma-specific advocacy group awareness was generally low (20%) but higher with university education (OR 4.27; 1.56-12.35). Few patients contacted cancer (14%) or sarcoma-specific groups (7%); contact was more frequent with longer diagnostic delays (OR 2.27; 1.11-4.63) or symptomatic presentation (OR 2.50; 1.04-5.97). Compared with the Portuguese cohort, Spanish patients were referred less frequently and had greater awareness of advocacy groups.

Conclusion: Socioeconomic disparities affect sarcoma diagnosis, referral, and advocacy group engagement, even within universal healthcare systems. Equity-oriented care requires timely SEC referral and advocacy group visibility.