Comparing regional models of congenital bleeding disorders: preliminary steps in the Italian context

Abstract

BackgroundAmong these diseases, congenital bleeding disorders (CBD) represent a significant societal burden in terms of high morbidity costs and health outcomes. In Italy, the organization and provision of health care is a regional responsibility and regions must assure equity and quality to all their residents. This is also true for CBD care which is provided by 54 multidisciplinary Hemophilia Treatment Centers (HTCs) distributed among the regions. With the present study, we intend to stimulate a debate on the effect that the decentralization process have in the delivery of services to CBD patients across Italy.MethodsThe available comparable measures of caseloads per center and interregional patient mobility, as proxies of quality and responsiveness of the regional network of HTCs, were first analyzed for the using data from the Italian Hemophilia Centers Association for the year 2012.ResultsNine thousand one hundred and thirty four Italian residents with CBD received care in at least one of the Italian HTC in 2012. Preliminary findings suggested room for improvement in health care delivery for CBD patients. In 2012, 16 HTCs out of 51 (31.4%) treated a number of patients under the minimum requirement for treatment center accreditation (10 severe patients). Moreover, data on interregional patient mobility highlighted differences in the ability of each region to retain its own residents or to attract residents from other regions.ConclusionsPreliminary study results showed significant disparities among regions in terms of volumes and mobility of residents with CBDs that cannot be completely explained by the different geographical characteristics. Therefore, the central government should consider taking concrete measures to bridge the gap between regions to assure access to quality care for all individuals with CBD independently from where they live and therefore to move toward a more integrated and homogeneous national network of care centers. Typology of disease, patients’ needs, and cost for outcomes, should have high priority on the political agenda. For CBD patients, even in a federal healthcare system, the national government should have the global responsibility to guaranteeing uniform levels of quality care over the country and overcome local institutions when necessary.

European Reference Networks: challenges and opportunities

“…National networks were established in some larger MS and provide basis for RD care pathways [Plan National Maladies Rares 2018-2022. Interregional collaboration reduces regional inequities and provides means for care pathways and referrals to ERNs in regionalized healthcare systems [Nuti et al 2017;Harrison et al 2015]. Centralization of services through designation and accreditation of RD CoE and careful endorsement of applicants for ERN FM ensure saving of scarce resources and provision of high-quality services [Pasquali et al 2019;Peycelon et al 2017;Pakarinen et al 2017].…”

PHAREO study: Perceived and observed accessibility to therapeutic drugs used for treating patients with inherited bleeding disorders

“…Accessibility to treatment is an understudied issue in the scientific literature, with territorial specificities, and in the diffusion of novel treatments 17 . Furthermore, accessibility is often analysed regarding access to care facility but a gap remains in the access to treatment, which is rarely investigated 18,19 . One of the learnings from a recent study, identified that travel time to care facilities (i.e.…”

“…17 Furthermore, accessibility is often analysed regarding access to care facility but a gap remains in F I G U R E 2 Levels of satisfaction with treatment accessibility for persons with haemophilia and other coagulation deficiencies the access to treatment, which is rarely investigated. 18,19 One of the learnings from a recent study, identified that travel time to care facilities (i.e. 30-min access to the hospital pharmacy) was an insufficient parameter in the absence of a measure of perceived quality-of-life of the patients themselves.…”