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, two universal healthcare systems with distinct sarcoma pathways. Materials and Methods Between April-December 2023, we conducted a survey-based study of adults with sarcoma under active treatment or follow-up across nine Spanish hospitals (5 SECs) and one Portuguese hospital. Sociodemographic and clinical data, referral patterns, and advocacy group awareness/contact were analyzed. Results 415 patients were included (Spain, n = 365; Portugal, n = 50). In Spain, lower income (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.