Tesi etd-01292024-121549
Link copiato negli appunti
Tipo di tesi
Dottorato
Autore
DE VITA, ERICA
URN
etd-01292024-121549
Titolo
Toward the elimination of Hepatitis C: an integrated, patient-centered frameworkfor monitoring and improving care pathways in Tuscany
Settore scientifico disciplinare
MED/42
Corso di studi
Istituto di Management - PHD IN HEALTH SCIENCE, TECHNOLOGY AND MANAGEMENT
Relatori
relatore Prof.ssa NUTI, SABINA
Parole chiave
- epidemiology
- HCV
- patient reported measures
- performance evaluation system
Data inizio appello
15/11/2024;
Disponibilità
parziale
Riassunto analitico
Introduction: Hepatitis C virus (HCV) remains a pressing global health issue despite
the availability of highly effective and well-tolerated direct-acting antiviral (DAA)
therapies. In Tuscany (Italy), efforts toward HCV eradication have intensified,
aligning with World Health Organization (WHO) targets. Three related studies were
conducted to (a) characterize HCV epidemiology and patient profiles, (b) explore how
patient-reported measures influence access to care, and (c) design a region-specific
pathway for monitoring HCV eradication progress.
Aim: This body of research aimed to: I. Examine changes in HCV infection trends and
treatment outcomes in Tuscany from 2015 to 2022; II. Investigate the role of patient-
reported experience and outcome measures (PREMs and PROMs) in facilitating or
hindering HCV treatment uptake; III. Develop an integrated care pathway, supported
by performance indicators, that systematically tracks prevention, screening, and
linkage to care for HCV in Tuscany, ultimately contributing to the goal of HCV
elimination.
Methods: All three studies were observational and focused on adult populations
receiving care within the Tuscan Regional Health Service. In the first study, a
retrospective multicenter analysis (2015–2022) employed administrative and clinical
data to assess epidemiological trends and DAAs’ impact on sustained virological
response (SVR). The second study deployed a longitudinal survey design to capture
PREMs and PROMs from HCV patients at different stages of their treatment journey,
examining their experiences and self-reported health status. The third study used
administrative data linkage and patient-reported measures to develop and validate a
set of performance indicators aligned with WHO guidance. These indicators were
then applied in a pilot program to construct a robust, patient-centered HCV care
pathway.
Findings: Paper 1 Epidemiological trends: DAAs significantly improved SVR rates
(exceeding 95% across most subgroups), even during the COVID-19 pandemic.
Younger individuals and those with genotype 3 became increasingly represented
among new HCV diagnoses, underscoring shifting demographics. Treatment uptake
slowed in specific high-risk populations (e.g., people who use drugs), suggesting a
need for more targeted strategies to reduce lost-to-follow-up cases;
Paper 2 Patient’s reported measures: Patients emphasized the importance of
streamlined pathways and effective communication with specialists and primary care
providers. Positive care experiences correlated with better treatment adherence,
whereas gaps in follow-up and administrative delays led to unmet clinical needs.
Patient feedback revealed barriers at both the diagnostic and treatment phases, such
as stigma, logistical challenges, and fragmented service coordination;
Paper 3 Care pathway and performance indicators: A pilot framework of 15 key
performance indicators (KPIs) was successfully designed to evaluate four dimensions:
prevention, linkage to care, treatment, and outcomes. Implementing this framework
in clinical settings highlighted performance strengths (e.g., efficient treatment
initiation) and weaknesses (e.g., delays in specific screening programs). The use of
longitudinal PREMs/PROMs proved instrumental in capturing patient-centred
insights and guiding data-driven interventions to improve retention in care.
Conclusions: These three investigations underscore Tuscany’s notable progress
toward HCV control. High cure rates with DAAs reflect a successful therapeutic
approach, yet real challenges persist—most notably, identifying asymptomatic
infections and engaging vulnerable or marginalized groups in sustained care.
Embedding patient-reported measures and standardized performance indicators into
routine practice can strengthen existing strategies by illuminating quality gaps and
ensuring that interventions are both evidence-based and patient-centred. This
integrated model, which combines epidemiological surveillance with comprehensive
patient feedback, offers a scalable blueprint for regions aiming to achieve the WHO’s
2030 elimination targets.
the availability of highly effective and well-tolerated direct-acting antiviral (DAA)
therapies. In Tuscany (Italy), efforts toward HCV eradication have intensified,
aligning with World Health Organization (WHO) targets. Three related studies were
conducted to (a) characterize HCV epidemiology and patient profiles, (b) explore how
patient-reported measures influence access to care, and (c) design a region-specific
pathway for monitoring HCV eradication progress.
Aim: This body of research aimed to: I. Examine changes in HCV infection trends and
treatment outcomes in Tuscany from 2015 to 2022; II. Investigate the role of patient-
reported experience and outcome measures (PREMs and PROMs) in facilitating or
hindering HCV treatment uptake; III. Develop an integrated care pathway, supported
by performance indicators, that systematically tracks prevention, screening, and
linkage to care for HCV in Tuscany, ultimately contributing to the goal of HCV
elimination.
Methods: All three studies were observational and focused on adult populations
receiving care within the Tuscan Regional Health Service. In the first study, a
retrospective multicenter analysis (2015–2022) employed administrative and clinical
data to assess epidemiological trends and DAAs’ impact on sustained virological
response (SVR). The second study deployed a longitudinal survey design to capture
PREMs and PROMs from HCV patients at different stages of their treatment journey,
examining their experiences and self-reported health status. The third study used
administrative data linkage and patient-reported measures to develop and validate a
set of performance indicators aligned with WHO guidance. These indicators were
then applied in a pilot program to construct a robust, patient-centered HCV care
pathway.
Findings: Paper 1 Epidemiological trends: DAAs significantly improved SVR rates
(exceeding 95% across most subgroups), even during the COVID-19 pandemic.
Younger individuals and those with genotype 3 became increasingly represented
among new HCV diagnoses, underscoring shifting demographics. Treatment uptake
slowed in specific high-risk populations (e.g., people who use drugs), suggesting a
need for more targeted strategies to reduce lost-to-follow-up cases;
Paper 2 Patient’s reported measures: Patients emphasized the importance of
streamlined pathways and effective communication with specialists and primary care
providers. Positive care experiences correlated with better treatment adherence,
whereas gaps in follow-up and administrative delays led to unmet clinical needs.
Patient feedback revealed barriers at both the diagnostic and treatment phases, such
as stigma, logistical challenges, and fragmented service coordination;
Paper 3 Care pathway and performance indicators: A pilot framework of 15 key
performance indicators (KPIs) was successfully designed to evaluate four dimensions:
prevention, linkage to care, treatment, and outcomes. Implementing this framework
in clinical settings highlighted performance strengths (e.g., efficient treatment
initiation) and weaknesses (e.g., delays in specific screening programs). The use of
longitudinal PREMs/PROMs proved instrumental in capturing patient-centred
insights and guiding data-driven interventions to improve retention in care.
Conclusions: These three investigations underscore Tuscany’s notable progress
toward HCV control. High cure rates with DAAs reflect a successful therapeutic
approach, yet real challenges persist—most notably, identifying asymptomatic
infections and engaging vulnerable or marginalized groups in sustained care.
Embedding patient-reported measures and standardized performance indicators into
routine practice can strengthen existing strategies by illuminating quality gaps and
ensuring that interventions are both evidence-based and patient-centred. This
integrated model, which combines epidemiological surveillance with comprehensive
patient feedback, offers a scalable blueprint for regions aiming to achieve the WHO’s
2030 elimination targets.
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