The American Recovery and Reinvestment Act of 2009 (ARRA) will result in a remarkable infusion of $19 billion into the US health care system for the adoption of health information technology (HIT), including electronic health records (EHRs) [1
], increasing hope that HIT will improve the quality and cost-effectiveness of chronic care management [2
]. However, it is not a foregone conclusion that such benefits will occur despite this substantial investment [3
]. Furthermore, most commercially available EHR systems have not demonstrated the ability to adequately support population management systems [4
]. In this context, lessons from a pilot study conducted in Italy should be useful.
In September 2003, the National Institutes of Health (NIH), in conjunction with its Italian counterpart, the Istituto Superiore di Sanità (ISS), convened an international working group to consider health outcomes for stroke survivors as a measure of health equity. Equity in health has been defined as “the absence of potentially remediable, systematic differences in one or more aspects of health across socially, economically, demographically or geographically defined population groups or subgroups[5
].” While acute stroke has previously been identified as a health disparity in the U.S.[6
], the NIH/ISS workgroup was particularly interested in increasing the awareness of clinicians, administrators and policy makers on quality of life, health services utilization and outcomes for what they termed “chronic stroke”. The concept of chronic stroke was loosely defined—it could be conceived as anything “after the acute admission” and certainly would be applied to the period following the natural trajectory of recover (6–9 months post-stroke). A methodology for monitoring access to health services and health outcomes for chronic stroke was identified as a priority and two local health authorities in Italy volunteered to serve as pilot sites.
The importance of chronic disease—which accounts for 78% of health expenditures in the U.S.[7
] -- is increasingly recognized as a significant issue, highlighting the need for more effective population based monitoring. For a number of reasons, stroke is an especially appropriate condition to examine for variations in health care utilization and outcomes. It is among the leading causes of adult death and disability in all industrialized nations [8
]. More than half of stroke victims will have residual motor deficits as well as other sequelae with potentially disabling and costly implications [9
]. The implications of stroke and the sequelae can be devastating for care-givers as well as patients and have a major impact on health and long term care costs [8
]. The prevalence of stroke is expected to increase in concert with the growing percentage of elderly [13
Among chronic diseases, stroke outcomes are particularly promising as an indicator of the overall quality of health-related services for several reasons: a) the relatively high incidence and prevalence of stroke [15
]; b) our knowledge of the natural history of recovery from the acute stage [9
]; c) stroke’s link to lifestyle, socio-economic, and health care dimensions, including uncontrolled hypertension, smoking, poor diet, and lack of exercise [19
], provides a gauge that spans both the health and social sectors; and, perhaps most importantly, because d) timely acute care, rehabilitation and community based services have the potential to return people to active lives and to prevent or delay subsequent disability and death associated with the chronic stage of stroke [20
In this latter context, rehabilitation for chronic stroke can play a key role. While we know that rehabilitation in the acute stage makes a difference in returning a portion of stroke victims to active lives, relatively little is known about the cost-effectiveness of differences in the timing, amount, duration, and setting of rehabilitation services needed to optimize this percentage in the chronic phase [29
]. Current belief is that this group continually recycles through traditional health care services in an attempt to manage the impairments, co-morbidities, and state of systematic disablement associated with chronic stroke [30
]. This systematic disablement is theorized to be the result of the sedentary lifestyle that follows stroke and the rapid cardiovascular and strength deconditioning process [31
]. There is growing evidence that deconditioning is not inevitable, and that maintenance rehabilitation in the chronic phase can improve function and quality of life for stroke survivors [33
Italy has one of the highest percentages of elderly individuals in its population, making it among the highest in Western Europe in the incidence and prevalence of stroke [36
]. The World Health Organization has ranked the Italian health system among the best in the world [37
]. Local health authorities in Italy have relatively sophisticated computerized administrative databases offering potential for monitoring and feedback. Florence (AUSL 10) and Empoli (AUSL 11), the two local health authorities in Tuscany that volunteered as pilot sites for this project are geographically adjacent and yet have distinct differences. AUSL 10 includes the historic city of Florence and has the health resources associated with a large urban area. By contrast, neighboring Empoli (AUSL 11) is characterized by small towns, a largely rural economy, and more modest health resources. This diversity, it was thought, could provide insight into community-level factors that might facilitate (or hinder) comparison of health services access, utilization and outcomes for chronic stroke.
In a recent reform of the National Health Services, Italy has adopted a semi-federal organization of health services. Italy is subdivided into 20 regional administrative authorities called “Regions”. . In the recent reform, Regions gained more autonomy from central government in the financing and planning of health care. Each Region was further subdivided into one or more AUSL, operating with a fixed budget and responsibility for the organization and delivery of health services for a defined population. Person-based health services utilization data are routinely maintained because each AUSL is required to report a standard set of data on the performance of its health system.
While the AUSLs’ performance reports did not include information specific to chronic stroke, the availability of inpatient utilization and diagnostic data suggested that such reporting might be feasible if a useful and simple to administer methodology were developed. The pilot study described in this report represents the first step in the development and utilization of a methodology that could be used by the various AUSL in Tuscany, and potentially by other political jurisdictions or health plans to monitor the factors and outcomes of care for people with chronic stroke. This paper presents the results of the Empoli-Florence pilot study, comparing health resources available in the community and utilized by stroke patients during the first 12 months post-stroke as well as outcomes (e.g. mortality). In addition, methodological issues in making comparisons of this type are discussed and recommendations are made for enhanced data collection.