Reshaping long COVID care through patient-reported needs

Background: Long COVID is a multisystem condition characterized by persistent or fluctuating symptoms following acute SARS-CoV-2 infection. Despite increasing scientific evidence, the alignment between patient needs and healthcare delivery remains limited. This study aimed to assess unmet clinical, psychological, and lifestyle needs among individuals previously evaluated at the Modena Long COVID Clinic and to inform a patient-centered redesign of Long COVID services. Methods: This observational study included individuals assessed at least once at the Modena Long COVID Clinic (Italy) between August 2020 and July 2025. Participants with valid email and phone contacts were invited to complete an online questionnaire exploring unmet needs across clinical, mental health, welfare, and lifestyle domains. The questionnaire also assessed Long COVID symptom clusters and health-related quality of life (HR-QoL) using the EQ-5D-5 L and EQ-VAS. Data were compared between the first clinical visit (baseline) and the follow-up survey. Results: Of 707 individuals contacted, 162 (22.9%) completed the survey (median age 56 years; 54.9% male). At follow-up, 80.1% reported at least one Long COVID symptom cluster, with significant increases in musculoskeletal (30.1% vs. 60.8%), neurocognitive (23.5% vs. 52.4%), and psychological (25.3% vs. 51.2%) domains. EQ-5D-5 L scores remained stable (median 83.0 vs. 84.1; p = 0.927), while self-rated health improved (60 vs70; p < 0.001). Unmet needs were common: 22.2% reported insufficient access to specialist consultations, 15.4% lacked psychological support, and 15.5% reported unmet needs for pain management. Conclusions: This study identifies substantial gaps between patient needs and existing care structures, emphasizing the need for a dynamic, cluster-based, and patient-centered approach. The results support the redesign of Long COVID services into five operational pillars: functional triage, empowerment and education, integrated cluster clinics, continuity of care through case management, and outcome-based evaluation. Such reorganization may enhance perceived health and well-being even when overall disability remains stable. Trial registration: Clinical trial number not applicable.