Exploring unmet needs in patient engagement among cardiovascular disease patients: qualitative research in Italy

Background Cardiovascular diseases (CVD) remain the leading cause of mortality and disability worldwide. In Italy, individuals at very high cardiovascular risk may encounter fragmented care pathways and territorially uneven access to preventive, specialist, and post-discharge services. Although patient engagement is recognized as a key determinant of long-term outcomes, limited qualitative evidence is available on how it develops across the cardiovascular care pathway. Objective This thematic analysis explored how patient engagement is experienced across the cardiovascular care pathway among individuals at very high cardiovascular risk in Italy, with particular attention to psychosocial, relational, and organizational factors. Methods A qualitative descriptive analysis using five participatory workshops was conducted with 24 patients and 5 caregivers across four Italian regions. Audio-recorded sessions were transcribed verbatim and analyzed thematically through an iterative hybrid inductive-deductive process, in addiction structured observational notes were recorded by the research team during workshops. The Patient Health Engagement (PHE) Model was used as an interpretive lens for higher-order analysis. Results Four phases across the cardiovascular care pathway were examined: diagnosis, hospital management, post-discharge, and adaptation to post-event life. Across these phases, engagement emerged as a dynamic process shaped by emotional disruption, therapeutic understanding, communication quality, and continuity of care. The transition from hospital to home was the most fragile phase, characterized by insufficient guidance, limited psychological support, and fragmented follow-up. Participants also described territorially situated differences in access to specialist referral, rehabilitation, and supportive services. Cross-cutting themes included inadequate doctor-patient communication, limited psychosocial support, caregiver burden, and the supportive role of patient associations. Conclusions Patient engagement in cardiovascular care is co-produced by individual, relational, and organizational factors. Strengthening discharge preparation, follow-up continuity, psychosocial support, and equitable access to rehabilitation may help sustain engagement over time. Future research should examine engagement trajectories longitudinally and investigate caregiver perspectives more systematically.