A longitudinal assessment of chronic care pathways in real-life: self-care and outcomes of chronic heart failure patients in Tuscany

BACKGROUND: Worldwide healthcare systems face challenges in assessing and monitoring chronic care pathways and, even more, the value generated for patients. Patient-reported outcomes measures (PROMs) represent a valid Real-World Evidence (RWE) source to fully assess health systems’ performance in managing chronic care pathways. METHODS: The originality of the study consists in the chance of adopting PROMs, as a longitudinal assessment tool for continuous monitoring of patients’ adherence to therapies and self-care behavior recommendations in clinical practice and as a chance to provide policy makers insights to improve chronic pathways adopting a patient perspective. The focus was on PROMs of patients with chronic heart failure (CHF) collected in the Gabriele Monasterio Tuscan Foundation (FTGM), a tertiary referral CHF centre in Pisa, Italy. During the hospital stay, CHF patients were enrolled and received a link (via SMS or email) to access to the first questionnaire. Follow-up questionnaires were sent 1, 7 and 12 months after the index hospitalisation. Professionals invited 200 patients to participate to PROMs surveys. 174 answers were digitally collected at baseline from 2018 to 2020 and analysed. Quantitative and qualitative analyses were conducted, using Chi2, t-tests and regression models together with narrative evidence from free text responses. RESULTS: Both quantitative and qualitative results showed FTGM patients declared to strongly adhere to the pharmacological therapy across the entire pathway, while seemed less careful to adhere to self-care behavior recommendations (e.g., physical activity). CHF patients that performed adequate Self-Care Maintenance registered outcome improvements. Respondents declared to be supported by family members in managing their adherence. CONCLUSIONS: The features of such PROMs collection model are relevant for researchers, policymakers and for managers to implement interventions aimed at improving pathway adherence dimensions. Among those, behavioral economics interventions could be implemented to increase physical activity among CHF patients since proven successful in Tuscany. Strategies to increase territorial care and support patients’ caregivers in their daily support to patients’ adherence should be further explored. Systematic PROMs collection would allow to monitor changes in the whole pathway organization. This study brings opportunities for extending such monitoring systems to other organizations to allow for reliable benchmarking opportunities. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-022-08522-0.