Integrated patient-reported and administrative data to optimize HCV care: insights from Italy

Abstract Background Despite the transformative efficacy of direct-acting antiviral therapies, persistent gaps in hepatitis C virus (HCV) screening, linkage to care, and retention hinder WHO 2030 elimination goals. Vulnerable populations, including people who use drugs and people living in prison, remain disproportionately affected. Integrating administrative data with patient-reported outcomes (PROMs) and experiences (PREMs) offers a novel opportunity to identify systemic gaps and optimize patient-centered interventions. Methods A multicenter, prospective study was conducted across seven HCV centers and three university hospitals in Tuscany (Italy) between 2021 and 2024. Administrative datasets were linked to PROMs and PREMs collected longitudinally at treatment initiation (T0), three months (T1), and six months post-treatment (T2), using a validated regional survey (including SF-12). Fifteen Key Performance Indicators (KPIs) were developed to monitor prevention, linkage to care, treatment, and outcomes. Results Among 953 patients, SVR12 was achieved in 93.4%. Screening and treatment initiation declined after 2019, with treatment delays increasing during the COVID-19 pandemic. PROMs showed significant improvements in physical and psychological health (p < 0.001). PREMs revealed deficiencies in diagnostic accessibility (mean score 44/100) despite high communication quality (94/100). Patients from addiction services and prisons reported higher psychological burden and loss to follow-up (up to 18%). Conclusions Integrating administrative records with PROMs and PREMs proved feasible and impactful for real-time monitoring. Traditional clinical metrics alone obscure critical barriers faced by vulnerable groups. Embedding patient perspectives enables dynamic pathway redesign, enhancing health equity and care sustainability. The Tuscany experience demonstrates a scalable model for integrating epidemiological and experiential data to accelerate progress toward HCV elimination goals. Key messages • Integrated, patient-centered monitoring systems are critical for identifying and addressing care gaps in HCV programs. • PROMs and PREMs provide actionable intelligence to improve retention and outcomes, especially among high-risk populations.