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Volume
3:
No. 4, October 2006
TOOLS & TECHNIQUES
The Great Lakes Regional Stroke Network Experience
Angela Bray Hedworth, MS, CHES, RHEd, Cassidy S. Smith, MPH
Suggested citation for this article: Hedworth AB, Smith CS.
The Great Lakes Regional Stroke Network experience. Prev Chronic Dis [serial
online] 2006 Oct [date cited]. Available from: http://www.cdc.gov/pcd/issues/2006/
oct/06_0026.htm.
Abstract
Stroke is a leading cause of disability and the third leading cause of
death among adults in the United States and in the Great Lakes states of
Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin. The Great Lakes
Regional Stroke Network was created to enhance collaboration and coordination
among the Great Lakes states to reduce the burden of stroke and stroke-related disparities
associated with race, sex, and geography.
Three priorities were identified for reducing the effects of stroke in the
Great Lakes region: 1) build epidemiologic capacity to improve stroke
prevention and control efforts, 2) facilitate systems-level changes and
collaborative efforts to improve acute stroke care and rehabilitation, and
3) promote awareness of the warning signs of stroke and the need to call
911. The
Great Lakes Regional Stroke Network has work groups in the areas of
epidemiology and surveillance, health care quality improvement, and public
education. These groups recommend initiatives to states for their efforts
to reduce the effects of stroke within the Great Lakes region. Examples of
recommended initiatives include identifying and prioritizing state research
evaluation needs for stroke, conducting a stroke education media campaign, and
developing a statewide emergency medical services protocol for stroke.
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Introduction
Stroke is the third leading cause of death in the United States and a
leading cause of long-term disability (1). In the United States there are approximately
4.5 million stroke survivors (2), and according to the American Stroke
Association (ASA), there are approximately 500,000 new strokes per year.
On average, someone has a stroke every 45 seconds, and someone dies of
a stroke about every 3 minutes. One third of strokes occur in people younger
than 65 years (3). In an article in Stroke, Elkins and Johnston predict
stroke deaths will increase 98% between 2002 and 2032 (4).
In 2004, the Centers for Disease Control and Prevention (CDC) funded a
regional stroke network comprising the following Great Lakes states: Illinois,
Indiana, Michigan, Minnesota, Ohio, and Wisconsin. One of the first tasks for the Great Lakes Regional
Stroke Network (GLRSN) was to develop a document
detailing stroke statistics for the Great Lakes region. In this area,
stroke is a leading cause of long-term adult disability, is the third
leading cause of death among adults, and accounted for 25,000 deaths, or
5.7% of all deaths, in 2002 (5).
According to estimates from the Behavioral Risk Factor Surveillance System
(BRFSS) and other state-administered surveys, more than 880,000 people in the
Great Lakes region live with the effects of stroke. In the Great Lakes
region in 2002, the age-adjusted stroke mortality rate per 100,000 people
ranged from 51.3 in Minnesota to 60.1 in Indiana; Illinois, Indiana, Michigan,
Ohio, and Wisconsin have higher rates of stroke mortality than the U.S. age-adjusted
rate of 56.4 per 100,000. These rates far exceed the Healthy People 2010
objective of no more than 48 stroke deaths per 100,000 (6). Black men in all six GLRSN states
had the highest age-adjusted stroke mortality rates overall with ranges from 74.6
in Wisconsin
to 89.9 in Ohio per 100,000.
Modifiable risk factors for stroke are prevalent in the Great Lakes region.
In 2003, Indiana, Michigan, and Ohio had higher percentages of adults with
diabetes, high cholesterol levels, and high blood pressure who also smoked,
were obese, and had an unhealthy diet compared to the U.S. median. Illinois had a higher
percentage of adults with diabetes and obesity and who had an unhealthy diet (7).
(Additional statistics about the region are available from the GLRSN Web
site at http://glrsn.uic.edu.*)
In 2003, CDC published A Public Health Action Plan to Prevent Heart
Disease and Stroke (8). One of the components of this comprehensive
action plan is to encourage the public health community to engage in regional
and global partnerships to increase stroke prevention resources and capitalize on shared
experiences. The ASA’s Task Force on the Development
of Stroke Systems also described a need for effective interaction and
collaboration among health care professionals, services, and agencies that
treat stroke (9). In 2002, a need for greater coordination and support
mechanisms among health care professionals was also mentioned by a task force
sponsored by the National Institute of Neurological Disorders and Stroke (10).
CDC recognized the importance of collaboration by state heart disease and
stroke prevention programs and funded three stroke networks. The GLRSN is the
most recently funded network (2004). Other stroke networks funded by CDC
include the Tri-State Stroke Network (established in the late 1990s to coordinate stroke
efforts in North Carolina, Georgia, and South Carolina) and the Delta States
Stroke Consortium (funded in 2002 to coordinate efforts in Alabama, Arkansas,
Louisiana, Mississippi, and Tennessee). The GLRSN benefited from the experiences of previous networks and adapted their models to the needs of the Great Lakes region.
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GLRSN Priorities and Work Assignments
The role of the GLRSN is to increase stroke awareness, prevention, and
control activities across the Great Lakes region (Illinois,
Indiana, Michigan, Minnesota, Ohio, and Wisconsin). These states have
partnered for more than 25 years on other cardiovascular disease initiatives.
Formation of the GLRSN presented a challenge for states to consider
initiatives that could affect change at a systems level. Internal structure of
the GLRSN includes a structure work group (initial stage), a steering
committee, a state advisory
board, work groups that address the
three
priority areas of epidemiology and surveillance, improved quality of care, and
public education, and state task force committees.
Structure work group
A structure work group was identified to create the infrastructure needed
for the GLRSN. This group created a policy and procedures manual to be updated
as needed with items such as job descriptions for work group leads,
information about how decisions are made, and conflict resolution steps. After
an initial year of meetings, this group decided to streamline GLRSN activities
and combine its meetings with those of the state advisory board.
Steering committee
The steering committee is composed of heart disease and stroke prevention
program staff, stroke task force liaisons, representatives from partner
organizations (e.g., ASA, the National Stroke
Association [NSA]), a CDC project officer, and priority work group representatives. This
group meets via conference call two to three times each year. The group’s focus is
professional development, and calls feature a professional presentation
from a stroke-related agency, such as the Brain Attack Coalition, the
Commission on Accreditation of Rehabilitation Facilities, or the Association
of Black Cardiologists. A strategic planning session of the state advisory
board found there is a need to enhance this committee with additional
professional organizations.
State advisory board
The GLRSN state advisory board includes state heart disease and stroke
prevention program managers and the steering committee. The state advisory board had its first face-to-face meeting
in February 2005 to develop a work plan to address coordination and
collaboration efforts to reduce the effects of stroke in Great Lakes states. The
state advisory board meets once a year and is the GLRSN
decision-making body responsible for strategic planning and setting
priorities. At a recent strategic planning session, the board recommended
enhancing the steering committee by seeking involvement with additional
professional organizations.
Priority work groups
The GLRSN identified the following three priority areas for its efforts to
reduce the effects of stroke in the Great Lakes region: epidemiology and
surveillance, improved quality of care, and public education. For each
priority area there is a work group comprising individuals from each state.
State heart disease and stroke prevention program managers identify a representative for each work group, and groups
communicate by
conference call.
Epidemiology and surveillance
The goal of the epidemiology and surveillance work group is to build
epidemiologic capacity to improve stroke prevention and control efforts. The
group determined that the following projects would help them meet this goal:
1) identify and prioritize stroke research and evaluation funding, 2) create
a single document detailing the effects of stroke within the Great Lakes
Region,
3) develop stroke fact sheets for each state, 4) collaborate with the GLRSN work group
focused on improved
quality of care to ensure uniform data collection
across the region, and 5) organize a data exchange to be held in Chicago in
December 2006 to discuss innovative stroke research projects in each of the
Great Lakes states.
Improved quality of care
The goal of the work group focused on improved quality of care is to facilitate
systems-level changes and collaborative efforts to improve acute stroke care
and rehabilitation. The following activities were identified to meet
this goal: 1) conduct an assessment of emergency medical services (EMS) in collaboration with the state EMS
agency to determine capacity to handle stroke emergencies, 2) develop or
improve statewide EMS stroke protocols to include use of a stroke scale or
clinical assessment tool (e.g., Cincinnati Stroke Scale, Los Angeles Prehospital Stroke Screen, or other emergency assessment)
to identify neurological deficits, 3)
promote appropriate stroke emergency training for dispatchers and first
responders, 4) conduct a stroke training module at state EMS conferences, 5)
collaborate with state quality improvement organizations on training
initiatives about stroke prevention and care, 6) promote communication among
rehabilitation specialists and managed care organizations to coordinate stroke
patient care effectively, 7) invite rehabilitation specialists and managed
care organizations to participate in state stroke task force committees, and
8) share successful stroke protocols (hospital, physician, and EMS) with the GLRSN.
The group working on improved quality of care reviewed findings from the
Paul Coverdell National Acute Stroke Registry prototypes in Michigan, Ohio
(11), and
Illinois (12) and from the Center for Medicare and Medicaid Services findings in
the Sixth Scope of Work stroke measures (13). These reviews revealed that
improvements are needed in the following areas: 1) deep vein thrombosis
prophylaxis, 2) lipid profiles, 3) coordination of atrial fibrillation
treatment with anticoagulation therapy, 4) dysphagia screening, 5) smoking
cessation counseling, and 6) physician, EMS personnel, and public education
about the urgency of stroke and the short time after a stroke that tissue plasminogen activator (tPA)
treatment can be given to some patients to reverse stroke effects.
The quality improvement group shared with GLRSN states a list of quality
improvement tools,
resources about evidence-based clinical guidelines, and stroke registry quality improvement
templates from the Illinois Care and Prevention Treatment Utilization Registry
(CAPTURE) program. The group assembled a
panel of EMS professionals to discuss EMS stroke initiatives with GLRSN
partners. Future work group projects include sharing stroke rehabilitation
resources among GLRSN states and cosponsoring workshops about improving stroke
quality of care with the National Stroke Association.
Public education
The goal of the public education work group is to promote awareness of the
warning signs of stroke and the need to call 911. The group identified the
following activities to meet this goal: 1) implement strategies to reach
high-risk populations with messages about stroke symptoms, 2) explore
partnership opportunities with major professional sports teams to create
stroke public education events, 3) conduct stroke awareness activities
annually in May and include events such as a proclamation by the governor to
declare May as stroke awareness month, 4) conduct a stroke education media
campaign using public service announcements or paid advertisements, and 5)
partner with state agencies, such as offices of bioterrorism and EMS, to
discuss expanded access to 911 and enhanced 911 services.
These activities require partnerships among state health departments, the
American Heart Association (AHA), ASA, NSA, and other public health stakeholders. The
public education work group has completed an inventory of stroke public
education events in all GLRSN states, prepared a resource list of available
stroke public education and media tools, and created a document, Working With
Professional Sports Teams: How to Do a Stroke Public Education Event, that
was distributed through the GLRSN Web site to members and other interested
groups and through the listserv for CDC cardiovascular state programs. The
goal of this document is to assist heart disease and stroke prevention
programs and partners to organize stroke education programs with the asset
of visibility that comes from working with professional sports teams.
State stroke task force committees
Each state developed a stroke task force committee if one did not already
exist, and states had different experiences because of varying legislative
requirements, organizational structures, and financial and staff resources.
States were given financial resources to begin and sustain a task force for
three years. Michigan has a stroke task force in place voluntarily, and
Ohio, Indiana, and Illinois have legislatively mandated stroke task forces.
Wisconsin and Minnesota developed stroke task forces after receiving
funding from the GLRSN.
The purpose of each task force is to implement recommendations developed by
work groups in the priority areas of epidemiology and surveillance, quality
of care improvement, and public education. Stroke task force committees
assist in providing direction for state systems-level change and
have been integral to the development of the GLRSN.
In states that receive CDC heart disease and stroke prevention program
funding, the stroke task force works closely with the state heart disease and
stroke prevention coalition. Stroke task force activities include 1) development
of treatment guidelines for stroke in Indiana, 2) in Wisconsin, the creation of two continuing
medical education programs about treatment of stroke and
stroke center certification by the Joint Commission on Accreditation of Health
Care Organizations (JCAHO), and 3) in Michigan, development of a fact sheet,
Understanding Your Health Care Benefits for Stroke Rehabilitation. Each state
stroke task force committee is instrumental in implementing recommendations
from GLRSN work groups.
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Successes
The GLRSN has carried out several successful projects since its inception,
and these include an inventory that is the first step in completing a regional
stroke plan for Great Lakes states. This comprehensive inventory of each state
will enable GLRSN states to better understand their capabilities in the following
areas: 1) EMS and stroke care, 2) state legislation related to
stroke, 3) stroke risk factors, 4) acute stroke treatment, 5) stroke
rehabilitation, and 6) state stroke task force committees.
Other GLRSN achievements include fostering partnerships among its states
and organizations, such as the AHA, ASA, NSA, and other national organizations,
and presenting posters at the International Stroke Conference and the Stroke
Belt Consortium.
The GLRSN has excelled at sharing stroke-related experiences and resources among its states
through its Web site, listserv, monthly e-bulletin, and
conference calls.
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Barriers to Implementation
Because the structure
of each state health department is unique and both financial and personnel
resources vary widely, the GLRSN has limited ability to implement some activities. Two
GLRSN states do not receive CDC funding
for state heart disease and stroke prevention programs.
The format and amount of stroke-specific data vary among states. After
several attempts, the GLRSN was unable to find and share comparable
state-specific quality improvement data for stroke because this information is
almost nonexistent in the Great Lakes region. Several hospitals in the region
have limited staff and funds for implementing stroke quality-of-care
improvement tools. As a result, data that do exist are not complete
representations of the state. Stroke mortality data by race were limited
because hospitals are not required to report data on race and ethnicity, and
population estimates on race and ethnicity are unreliable. Not all states
conducted the heart disease and stroke module in the BRFSS survey, and this difference resulted in variations
of available data. A variety of stroke education materials are used by GLRSN states, and there is no consistent message
or evaluation
for these materials.
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Going Forward
The GLRSN identified the following elements as necessary to continue
developing and enhancing a regional approach to reduce the effects of
stroke: 1) a public education message must be developed so that a
consistent message about stroke symptoms and response is presented across the
region; 2) a systematic, regional approach to data collection and analysis is
needed to assess the scope of the regional effects of stroke; 3) stroke
quality-of-care improvement initiatives that can benefit the region as a whole
should be explored and implemented; and 4) financial sustainability for the GLRSN must be achieved to enable the network to continue its mission of
collaboration and coordination among Great Lakes states to reduce the burden
of stroke and stroke-related disparities associated with race, sex, and geography.
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Conclusion
The GLRSN is a regional partnership of state heart disease and stroke
prevention programs, community partners, national organizations, and state
stroke task force groups. The goals of the GLRSN are to increase stroke awareness
and
prevention activities across the Great Lakes region and to
enhance collaboration and coordination among states to reduce the effects of
stroke. The GLRSN operates through work groups that focus on three priority areas:
epidemiology and surveillance, quality-of-care improvement, and public
education. Recommendations from these work groups are presented to each state
stroke task force for review and consideration so that the task force can
select and implement recommendations as resources allow.
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Acknowledgments
The Illinois Department of Public Health receives support from CDC to serve
as the administrative and fiscal agent for the GLRSN. The Illinois Department
of Public Health supports the Center for Stroke Research at the University of
Illinois at Chicago to provide scientific and administrative assistance for
GLRSN activities. The GLRSN thanks the states of Illinois, Ohio, and Michigan for sharing
their Paul Coverdell National Acute Stroke Registry prototype data.
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Author Information
Corresponding Author: Angela Bray Hedworth, Great Lakes Regional Stroke
Network, Center for Stroke Research, University of Illinois at Chicago, 1645 W
Jackson Blvd, Suite 400, M/C 796, Chicago, IL 60612. Telephone: 312-355-5423. E-mail: hedworth@uic.edu.
Author Affiliations: Cassidy S. Smith, Colorado Clinical Guidelines
Collaborative, Lakewood, Colo.
Ms. Smith was with the Great Lakes Regional Stroke Network, Center
for Stroke Research, University of Illinois at Chicago, Chicago, Ill, at the
time the article was written.
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by CDC or the federal government, and none should be inferred. CDC is
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