Assessing the performance of the heart failure pathway in regional healthcare systems: towards a data-driven, patient-centered approach

Heart failure (HF) is a prevalent, long-term condition affecting millions worldwide, with an estimated prevalence of 1-2% of adults in developed countries. Evaluating healthcare systems' performance in managing this condition is crucial for driving improvements in HF care and carries significant public health implications. In Italy, regional healthcare systems are responsible for organizing and delivering healthcare services. They undergo performance assessments at the national level and can participate in voluntary initiatives, such as the Italian Regional Performance Evaluation System (IRPES) promoted by Scuola Superiore Sant'Anna Healthcare and Management Laboratory. Despite the increasingly available data for monitoring and evaluating HF healthcare services, it is vital to ensure that performance indicators meaningfully impact health outcomes and promote patient-centered care; moreover, it is vital to consider a more holistic approach of population management to positively impact health gains for the whole population considering issues of equity and sustainability. This thesis includes three studies on health services evaluation for HF patients. The first study develops and tests a comprehensive set of HF performance indicators using administrative health data from Tuscany, Italy. Incorporating new and existing indicators, these measures span from disease prevention to end-of-life (EoL) care. The visualization of results is reported in the stave (or pathway chart), which depicts the performance information following the main phases of the patient care pathway, allows systematic benchmarking, and facilitates depicting unwarranted variation. This chart facilitates a purposeful use of information to policymakers and healthcare providers at regional and individual organization levels. The second study explores EoL care for HF patients through two cross-sectional surveys: one directed to cardiology unit directors and one to palliative care unit directors in Tuscany. A total of 43 responses (100% response rate) have been received. This research offers valuable insights into the organization, practices, and professionals' perceptions of end-of-life care in HF, highlighting the need for an exchange of competencies between palliative care specialists and cardiologists and an integrated model of care for HF patients at the EoL. The third study presents the results of a user-based design of patient-reported outcome measures (PROMs) for HF in a tertiary referral cardiology hospital. By using the Non-Adoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework, a qualitative study was carried out to assess the levels of intervention complexity to promote the implementation and integration of PROMs in clinical practice. By leveraging real-world data analysis and qualitative methods, the three studies provide valuable knowledge on how new performance metrics and tools can support regional healthcare systems and professionals in managing a chronic condition; these findings can be adapted and used in other clinically relevant diseases.