Taking care of people with Spinal Cord Injury in the Italian regions A National Research Project Salvatore Ferro Department of Hospital Services Regional Health and Welfare Authority Emilia-Romagna Region Siracusa, October 21th, 2013 Ministero della Salute Points of excellence Primary Objectives • To estimate the incidence of traumatic spinal cord injury in the Italian regions in the period October 1, 2013 September 30, 2014; • To describe the pathways of care of spinal cord injury (SCI) patients from the acute to rehabilitation phase and from hospital to primary care services in order to improve the quality of care; • To define the cost of hospital care for SCI patients • To perform a cost-effectiveness analysis between different model of care Work Packages • The National Agency for Health Service Research , Rome (Age.Na.S.) – PI Salvatore Ferro • The Montecatone Rehabilitation Institute (Azienda Usl di Imola) – PI Marco Franceschini; • The Department of Statistics of University of Florence – PI Annibale Biggeri; • The Department of Economics Studies of University of Milan (CERGAS) – PI Giovanni Fattore • in .collaboration with the National Association of SCI patients (FAIP) 2 year Project FUNDING : 496.500 Euro Spinal Cord Injury (SCI) Background • • • • • • Spinal Cord Injury (SCI) is one of the most significant causes of mortality and disability in the world. The reported incidence varies in a range from 15 to 45 cases per million. In Italy the incidence of SCI is approximately 18-20 per million inhab./year; Results of the Italian survey of SCI on rehabilitation services (37) found 1014 new cases in two years (GISEM); The most common causes of SCI are motor vehicle accidents, falls, violence and sports injuries. Outcomes are strongly influenced by the surgical and pharmacological treatment in the acute phase, the place of medical care, the relative length of stay (LOS) in hospital and the availability of services. In US, costs for medical care and intensive rehabilitations are extraordinarily high. Rapporto Fondazione ISTUD per INAIL - FAIP La composizione dell’offerta socio-sanitaria per le persone con lesione midollare in Italia. Report completo - Aprile 2011 Disability 70.000 people with Spinal Cord Injury in Italy 1 aprile 2011. Ogni anno diventano para e tetraplegiche circa duemila cittadini, due terzi dei quali under 60. Ma a fronte di una domanda di ricoveri intorno ai 2.000-2.500 casi, l'offerta sanitaria è scarsa. A Roma il convegno "Disabilità: ora serve una rete sanitaria e sociale che sappia prendersi cura delle persone con lesione midollare" ROMA - In Italia sono circa 70mila le persone con esiti di lesione al midollo spinale di cui i 2/3 hanno una età inferiore ai 60 anni. Ogni anno diventano para e tetraplegiche nel nostro paese circa 1.500 -2.000 persone (almeno quattro/cinque al giorno), con un'età per i 2/3 inferiore ai 60 anni. Ma a fronte di una domanda di ricoveri, sia in fase acuta che in fase di secondo ricovero, che si aggira sui 2.000-2.500, l'offerta sanitaria rimane scarsa, con circa 400-500 posti letto qualificati sull'intero territorio nazionale. Spinal Cord Units – Number of Beds in the Italian Regions (Anno 2011) – Italian Health System Descrizione Regione Posti letto Ordinari Posti letto Day Hospital Totale posti letto PIEMONTE 72 11 83 LOMBARDIA 99 9 VENETO 104 FRIULI VENEZIA GIULIA ABITANTI TASSO PL ORD per milione ab TASSO PL TOT per milione ab CASI ATTESI TOTALI * Indice di affollam ento 4362010 16,5 19,0 109 1,5 108 9748171 10,2 11,1 244 2,5 5 109 4866324 21,4 22,4 122 1,2 49 1 50 1220078 40,2 41,0 31 0,6 LIGURIA 27 1 28 1577439 17,1 17,8 39 1,5 EMILIA ROMAGNA 60 0 60 4351393 13,8 13,8 109 1,8 TOSCANA 40 3 43 3677610 10,9 11,7 92 2,3 UMBRIA 12 1 13 886479 13,5 14,7 22 1,8 LAZIO 44 1 45 5551135 7,9 8,1 139 3,2 SARDEGNA 14 1 15 1643584 8,5 9,1 41 2,9 CAMPANIA 15 0 15 5772388 2,6 2,6 144 9,6 PUGLIA 14 0 14 4050817 3,5 3,5 101 7,2 ABRUZZO 25 0 25 1307199 19,1 19,1 33 1,3 Totale 13 575 33 608 49.014.627 11,7 12,4 1225 2,1 Spinal Cord Injury Incidence Study To estimate the Incidence • Incidence data are very important both in tracing the occurrence of SCI and in deciding on SCI prevention strategies. In this way, epidemiologic data are essential to plan clinical and community services for individuals with traumatic SCI, whose post injury survival has increased conspicuously in recent years. • The incidence rate is the number of new cases of cord injury per person-time ; Spinal Cord Injury Incidence Study • Recruitment of Acute and Rehabilitations Units in Italy for SCI patients (the study network); – Spinal Surgery Units ; – ICU; – Spinal Cord Units and Rehabilitation Unit ; • Study Protocol and the Data Collection Forms; • Use of information systems: National data base of hospital discharges ; trauma registries ect . HUB & SPOKE - MAJOR TRAUMA Hub and Spoke – Major Trauma Hospital Facilities • Trauma Center (Hub) : Trauma Leader, 400-500 patients/year, presence of the following facilities H24/year: – – • Ready on Demand – – • Orthopaedist Surgeon ; Interventional Radiologist ; Thoracic and Vascular Surgeon ; Plastic Surgeon; Otolaryngologist and Ophthalmologist; Urologist Regional Service for rare major trauma – • • • • • Emergency Department ; Intensive Care Unit (ICU); General Surgery; NeuroSurgery Images Department – Laboratory and Haematology Service (blood tranfusion) Pediatric Surgeon; Pediatric Intensive Care Unit; Surgery for artificial limb; Hand Surgery; Center for High Degree Burn; Heart Surgery Transfer Criteria from Spoke to Hub (Head and Spinal) Inhospital Trauma Service to look and control the organization Telemedicine (TC images on intranet) Regional Information System on Major Trauma Regional Technical Commission on Major Trauma HUB & SPOKE – SPINAL CORD INJURY REHABILITATION Points of excellence The Film Director Federico Fellini Piero della Francesca “Sigismondo Pandolfo Malatesta Praying in Front of St. Sigismund” - 1451 – Fresco, Tempio Malatestiano di Rimini Methods (1) Study Population • Patients with traumatic spinal cord injury in the Italian regions will enrolled during the period October 2013 - September 2014; Case Definition : • A case of spinal cord injury is defined as the occurrence of an acute traumatic lesion of neural elements in the spinal canal (spinal cord and cauda equina), resulting in temporary or permanent sensory and/or motor deficit. Neurological evaluation • According to American Spinal Injury Association (ASIA) define level and completeness ASIA Impairment Scale (A-B-C-D-E). Materials and methods (2) Diagnostic validation = Clinical + CT or MRI of the spinal cord Inclusion criteria • • All patients with traumatic spinal cord injury in the Italian regions enrolled between October 2013 and September 2014; The spinal cord injury’s etiology is defined according to the International Data Set for Spinal Cord Injury recently suggested by ISCoS. Exclusion criteria • All patients with ereditary and/or congenital deseases, with Multiple Sclerosis, with secondary neoplasms and with 1st and 2nd motorneuron deseases will be excluded Materials and methods (3) Data collection (demographic and clinical data) • Forms for collecting information about a incident case of traumatic SCI; • T1: Forms for collecting information on adimission to Spinal Cord Unit ; • T2: Forms for collecting information on discharges from Spinal Cord Unit ; • Forms for collect structural and organization information on Spinal Cord Unit (year 2012); Points of excellence Santiago Calatrava Bridge in Reggio Emilia The Italian politician and statesman Romano Prodi Spinal Cord Injury Network Regione Referente Regionale Referente Rete Trauma Esperto di Paraplegia Emilia Romagna S. Ferro G. Gordini - F. De Iure J. Bonavita Friuli Venezia Giulia A. Fanzutto P. Del Fabro A. Zampa Lazio F. Fei C. Pilati Liguria A. Massone A. Massone Lombardia M. A. Banchero A. Signorelli C.M. Borghi Marche P. Carletti P. Pelaia M. A. Recchioni Piemonte D. Nizza M. V. Actis Puglia M. Ruccia P. Fiore Sardegna G. Campus G. Campus Sicilia M. G. Furnari F. Franchina M. P. Onesta Toscana P. Salvadori M. Moresi G. Del Popolo Umbria M. Zenzeri L. Caruso M. C. Pagliacci Veneto M. Saia G. Bertagnoni Data Collection Regione Figura Professionale Responsabile di riferimento Lombardia Physioterapist M. A. Banchero Lombardia Physioterapist M. A. Banchero Umbria Physioterapist M.C. Pagliacci Piemonte Welfare worker M.V. Actis Toscana Physician G. Del Popolo Veneto Physician G. Bertagnoni Puglia Physician P. Fiore Emilia-Romagna Statistician J. Bonavita The Steering Committee of the Study Salvatore Ferro; Marco Franceschini; Annibale Biggeri; Gabriele Accetta; Giovanni Fattore; Elenora Corsalini; Mariadonata Bellentani; Augusto Cavina; Jacopo Bonavita; Giovanni Gordini; Maria Cristina Pagliacci; Antonietta Citterio; Renato Avesani; Vincenzo Falabella; Maria Vittoria Actis; Giulio Del Popolo; Agostino Zampa; Tiziana Redaelli; Giannettore Bertagnoni. Federico De Iure; Points of excellence The musical art director Riccardo Muti The mosaic of Emperor Justinian and his retinue (executed in 548 ac ) Thank you for your attention!