A GLOBAL HEALTH CARE DISPARITY: MANAGED CARE FOR PATIENTS WITH CHRONIC STROKE CONDITIONS

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1 A GLOBAL HEALTH CARE DISPARITY: MANAGED CARE FOR PATIENTS WITH CHRONIC STROKE CONDITIONS International workshop jointly organised by NATIONAL INSTITUTES OF HEALTH (USA) & ISTITUTO SUPERIORE DI SANITÀ (ITALY) in collaboration with: AUSL 10 - REGIONE TOSCANA AUSL 11 - REGIONE TOSCANA Under the auspices of THE ITALIAN MINISTRY OF HEALTH 7-8 November 2004 Centro Studi Fondazione Cassa di Risparmio di San Miniato, Convento I Cappuccini San Miniato, Pisa, Italy

2 Rationale Stroke has a high incidence in western industrialized countries (about 2.2/1000). One-month mortality is 20-30%, 1-year mortality is 25-40%, and 3-year mortality 32-60%. The ten year survival rate is estimated around 35%. Therefore, the prevalence of stroke survivors is high and ranges between 500 and 800 cases per 100,000 population. Neurological and functional recovery occurs more rapidly in the first 1-3 months but some patients continue to improve after that time. Studies have reported that some neural and functional recovery continues afterwards. However, 35-40% of the survivors have severe disability that in most cases is secondary to significant residual neuromuscular impairments. These impairments result in functional limitations that affect mobility, activities of daily living and quality of life. In addition, disability may be influenced by many non-disease factors such as depression, lack of family support, societal barriers, lack of vocational pursuits, and other negative feedback loops, where disability leads to further disability or to additional chronic medical conditions. Not surprisingly, given the high incidence of the disease and the high prevalence of survivors, stroke is one of the most costly conditions for health services. Most of the cost and impact studies have taken into account just acute hospital care. However, some have considered cost more extensively. These indicate hospital costs represent only 20% of the total amount. One of the major challenges of health care systems is the long-term continuity and coordination of care for stroke survivors. Community services face the challenge of sustaining the gains obtained during intensive acute care rehabilitative programs. Unfortunately, limits to resources often result in the implementation of operational strategies whose usefulness is far from being proved. In spite of the great burden of stroke sequelae on patient s quality of life, families, and health systems, there appears to be little data and no consensus regarding systems for the provision and coordination of long-term care for stroke survivors. Comprehensive clinical guidelines have been published by different institutions. However, these have been primarily focused on the early stages of the disease, leaving long-term continuity and coordination of care for stroke survivors largely neglected. Objectives Facilitate the international sharing of information and expertise in health care delivery systems, rehabilitation care strategies, and rehabilitation research on the management of chronic stroke. Gather and document evidence indicating the extent to which chronic stroke is a global health care disparity. Facilitate future international medical rehabilitation research on patients with chronic stroke conditions.

3 Sunday, 7 November 2004 OPENING CEREMONY Chairmen: Enrico Garaci, Alessandro Reggiani Welcome addresses ISS-NIH agreement Enrico Garaci Introductory remarks: aims of the meeting Velio Macellari, Steven J. Stanhope, Michael Weinrich Stroke management disparities across Americas Armando J. Vasquez B Welcome Reception Monday, 8 November 2004 POLICIES FOR CHRONIC STROKE IN EUROPE AND IN USA Chairmen: Gianfranco Gensini, Carlo Tomassini 9.00 Review of chronic stroke studies David Good 9.30 Experience in Switzerland Jürg Kesselring Experience in Danemark Henrik Stig Jorgensen Experience in Germany Clemens Becker Break Experience in England Anthony Rudd Experience in USA Alberto Esquenazi Policy issues Mary Stuart Break

4 POLICIES FOR CHRONIC STROKE IN ITALY Chairmen: Giulio Masotti, Enrico Roccato The Italian Health Service Giovanni Zotta The assistance to stroke patients in the Italian Health Service planning Filippo Palumbo Epidemiology of stroke in Italy Simona Giampaoli The Italian Network Program on Stroke. From the acute hospital care to the management of chronic stroke Giuseppe Nappi Break The role of the IRCCS Marcello Imbriani Experience in Tuscany: AUSL 10 of Florence Carlo R. Tomassini Experience in Tuscany: AUSL11 of Empoli Enrico Roccato Experience in Lombardy Maurizio Amigoni Conclusions Michael Weinrich

5 Workshop Coordinators FRANCESCO BENVENUTI, VELIO MACELLARI, STEVEN STANHOPE, MICHAEL WEINRICH Local Organizing Committee CRISTINA ABBA, FRANCESCO BENVENUTI, ADRIANA GERINI, ROMANA GIACHI, LUIGI MARMUGI, DANILO MASSAI, SABRINA SANI, ANTONIO TAVIANI, CLAUDIA TUMIATTI Chairmen and Speakers Maurizio Amigoni - Director, Dipartimento Programmazione, Assessorato Sanità, Regione Lombardia, Milano, Italy Clemens Becker - Director, Klinik für Geriatrische Rehabilitation, Robert-Bosch Krankenhaus, Stuttgart, Germany Alberto Esquenazi - Chairman, Department of Physical Medicine and Rehabilitation, Moss Rehabilitation Hospital, Philadelphia, PA, USA Enrico Garaci - President, Istituto Superiore di Sanità, Roma, Italy Gianfranco Gensini - Dean, Facoltà di Medicina, Università di Firenze, Firenze, Italy Simona Giampaoli - Director, Unit of Epidemiology of cerebro and cardiovascular diseases, Centro Nazionale di Epidemiologia, Sorveglianza e Promozione della Salute, Istituto Superiore di Sanità, Roma, Italy David Good - Medical Director, Program in Rehabilitation, Department of Neurology, Wake Forest University School of Medicine, Wake Forest, NC, USA Marcello Imbriani - Scientific Director, Fondazione S. Maugeri, IRCCS, Pavia, Italy Henrik Stig Jorgensen - Director, Stroke Unit, Department of Neurology, Hillerod Hospital, Hillerod, Denmark Jürg Kesselring - Director, Chefarzt Neurologie, Rehabilitationszentrum, Valens, Switzerland Velio Macellari - Director, Biomechanics and Rehabilitation Technologies Unit, Dipartimento Tecnologie e Salute, Istituto Superiore di Sanità, Roma, Italy Giulio Masotti - Director, Istituto di Gerontologia e Geriatria, Facoltà di Medicina, Università di Firenze, Firenze, Italy Giuseppe Nappi - Scientific Director, Fondazione C. Mondino, IRCCS, Pavia, Italy Filippo Palumbo - Director, Direzione Generale della Programmazione Sanitaria, dei Livelli Essenziali di Assistenza e dei Principi Etici di Sistema, Dipartimento della Qualità, Ministero della Salute, Roma, Italy Alessandro Reggiani - General Director, Health Authority 11, Regione Toscana, Empoli, Italy. Enrico Roccato - Medical Director, Health Authority 11, Regione Toscana, Empoli, Italy. Anthony Rudd - Consultant Stroke Physician, Guy and St. Thomas Hospital, London, UK. Steven J. Stanhope - Director, Physical Disabilities Branch, National Institutes of Health, Bethesda, MD, USA. Mary E. Stuart - PhD, Professor and Chair, Department of Sociology and Anthropology, University of Maryland, Baltimore, MD, USA. Carlo R. Tomassini - Medical Director, Health Authority 10, Regione Toscana, Firenze, Italy Armando J. Vásquez B. - Asesor Regional de Prevención de Discapacidades y Rehabilitación OPS/OMS. THS/MH/RHB, PWR-NIC. Complejo de Salud "Concepción Palacios". Managua, Nicaragua. Michael Weinrich - Director, National Center for Medical Rehabilitation Research, National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, MD, USA. Giovanni Zotta - Director, Direzione Generale della Ricerca Scientifica e Tecnologica, Dipartimento dell Innovazione, Ministero della Salute, Roma, Italy

6 Organising Secretariat EXTERNAL RELATIONS OFFICE A.M. Diodovich, A. Morace Istituto Superiore di Sanità Via Giano della Bella Roma Phone Fax Web site: Local Organising Committee Secretariat Dipartimento Formazione, Piazza Ristori 1, Empoli (FI) Ms Giusy Esposto, Ms Agnese Frullatori Phone Fax For further information: Venue The workshop will be held at: Centro Studi "I Cappuccini" Via Calenzano, San Miniato (PI), Italy Phone Fax Accommodation Centro Studi "I Cappuccini" has excellent facilities for lectures and group meetings. Accommodation in twin-bedded rooms is available on site for 60 participants with about 40 places available nearby. Travelling By air AIRPORT OF PISA: daily flights from London, München, Paris. Excellent services to Rome and Milan with connection to International and European flights. There is a train service from Pisa Airport to Pisa Central Station and from Pisa Central Station to San Miniato-Fucecchio (line Pisa-Florence). Make sure that the train you take stops at the San Miniato-Fucecchio station. AIRPORT OF FLORENCE: daily flights from Amsterdam, Barcelona, Bruxelles, Frankfurt, London, Lugano, München, Nice, Paris, Wien, Milan, Rome. There is a good train service from Florence SMN (Santa Maria Novella) Railway Station to San Miniato-Fucecchio (line Florence-Pisa). Make sure that the train you take stops at the San Miniato-Fucecchio station. By train FLORENCE SMN (Santa Maria Novella): Intercity and Eurostar train services from Rome (travelling time 2 hours) and Milan (travelling time 2 hours 45 minutes) to Florence. There is a good train service from Florence SMN Railway Station to San Miniato-Fucecchio (line Florence-Pisa). Make sure that the train you take stops at the San Miniato-Fucecchio station. On Sunday 7th and Monday 8th November 2004 a shuttle bus will be available from San Miniato- Fucecchio Railway Station to the Conference site from 10 a.m. till 10 p.m..

7 By car Take the Firenze-Pisa-Livorno Superstrada (NOT the Autostrada A11), which can be accessed either from the Autostrada A1, at the "Firenze Signa" exit, or from the Autostrada A12, at the "Pisa Centro" exit. Exit the Superstrada at "San Miniato." Follow the signs to San Miniato, then those to the Hospital (Ospedale), and finally those to "I Cappuccini". Registration The Registration Desk will open on Sunday November 7th 2004 at 11:00 a.m. The workshop admittance is free. Since space is limited to 120 participants, advance registration is required. To register please complete the attached registration form and return it by or FAX to the Local Organizing Secretariat. A confirmation letter or message will be sent upon receipt of registration on the basis of the available space. Extra Nights If you are planning to spend extra nights in Italy and you are looking for Hotels, consult the following web site: Language The official language of the workshop will be English. Italian-English simultaneous translation will be provided.

8

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