"My grandma lost both legs to diabetes; my mama already lost her foot and now I got diabetes. I figured I would just lose my legs, too. I never know there was anything I could do to stop it." Quote from a focus group participant (1999).
WHEN the Racial and Ethnic Approaches to Community Health (REACH) Charleston and Georgetown Diabetes Coalition began its community assessment and planning during 1998 to 2000, similar comments were heard during focus groups with community members. Participants were concerned about diabetes and the possible loss of lower extremities resulting from diabetes-related nerve and vascular complications.
This article describes the background and interventions over the past 10 years to improve primary and secondary prevention of lower-extremity amputations (LEAs) in people with diabetes. It also reports on progress made in the reduction of LEAs in Charleston and Georgetown counties, a 2-county area spanning 1600 square miles along coastal South Carolina.
The REACH Charleston and Georgetown Diabetes Coalition was officially created in 1998 to 1999 in response to a call from the Centers for Disease Control and Prevention for REACH demonstration projects that reduce health disparities in one (or more) of 6 health priority areas: infant mortality, improving breast and cervical cancer screening and management, cardiovascular disease, diabetes, improving child and/or adult immunization levels, and human immunodeficiency virus/AIDS in racial and ethnic populations (African American, American Indian, Alaska Native, Hispanic American, Asian American, and Pacific Islander). Our coalition's focus was to reduce health disparities in African Americans with diabetes. At the request of several initial coalition partners, the Medical University of South Carolina's College of Nursing and the Diabetes Initiative of South Carolina were identified as the lead agencies to coordinate coalition activities. The coalition structure and foci on diabetes in African Americans have been described in previous manuscripts,1-9 and the coalition is a community-academic partnership using community-based participatory action principles of partnership and research. The coalition partners include health systems (hospitals, community health centers, and their providers); public health departments; voluntary, sorority/fraternity Greek organizations, and professional organizations; public libraries; quality improvement organizations; social service agencies; grassroots groups; universities; and statewide organizations. The initial coalition partners are shown in Figure 1.
|Figure 1. Racial and Ethnic Approaches to Community Health Charleston and Georgetown Diabetes Coalition and Partners. Reproduced From REACH Charleston and Georgetown Diabetes Coalition, Medical University of South Carolina, College of Nursing. Reproduced with permission from REACH Charleston and Georgetown Diabetes Coalition 2000-2007 Strategic PLan by C. Jenkins, Principal Investigator, REACH Charleston and Georgetown Diabetes Coalition, Medical University of South Carolina, College of Nursing.|
Problems associated with diabetes-related amputations were identified through key informant interviews and focus groups conducted with African Americans with diabetes, community leaders, and health care professionals. This information was combined with an analysis of related epidemiological and other published data.1Table 1 provides a list of the major disparities identified by the coalition.
|Table 1. Identified Disparities for African Americans With Diabetes (as Compared With Whites With Diabetes) in Charleston and Georgetown Counties|
Our findings indicated that the care of foot conditions and LEAs associated with diabetes in African Americans is a problem in the 2 South Carolina coastal counties. State,10 national,11 and international groups12 are also challenged to reduce the number of diabetes-related LEAs.
A goal of Healthy People 201013 is to reduce the rate of LEAs from an average of 4.1 LEAs per 1000 persons with diabetes per year (baseline 1997) to 1.8 LEAs 1000 persons with diabetes per year in 2010. National baseline data (1997) for whites was 2.6 LEAs per 1000 whites with diabetes per year, while baseline data for African Americans was 4.8 LEAs per 1000 African Americans with diabetes. Data also indicated that the rate of LEAs in African Americans increases with age.
During the 1999 data assessment, the coalition identified more than 11000 African Americans with diabetes who were enrolled in the health care systems of coalition partners, including 3 federally qualified health centers, one academic health center, and one government health system. Of these 11000 African Americans with diabetes, more than 60 reported an LEA during 1998 to 1999. The coalition identified and acknowledged this as a health disparity. However, there were insufficient scientifically validated data to support best practices for improving effective foot care practices and amputation prevention in African Americans with diabetes. Furthermore, there was insignificant evidence for community-based population care for preventing diabetes-related LEAs in African Americans.
COMMUNITY ACTION PLAN FOR DECREASING DISPARITIES
The coalition agreed to focus our program's interventions on the following:
1. Evidence-based health systems change14,15 using continuous quality improvement methods;
2. Community-driven educational activities and the creation of healthy learning environments for all using community-generated ideas or evidence integrated with the evidence-based guidelines for diabetes care15; and
3. Coalition power to foster collaboration, trust, and sound business planning for sustainability.
The coalition agreed to collaborate with health care professionals and scientists to determine the science or evidence-based information for this situation. Community leaders determined what, when, where, and how to apply the science or evidence in the community. This combined effort generated community evidence and translated the coalition's findings into individual, organizational, and community behavior change, advocacy activities, and policy changes.
Our initial conceptual framework for change was based on the Chronic Care Model.14 The Chronic Care Model, developed by Wagner,14 is the most commonly used framework for improving chronic care in health systems. The Chronic Care Model encompasses essential elements in the health system including a clinical information system, delivery system design, decision support, self-management support, and referral to community resources. When these elements are combined with informed, activated patients and prepared, proactive health providers with resources and expertise, more productive interactions occur between the health provider team and the patient. These productive interactions provide a catalyst for change in chronic illness care and management. The REACH Charleston and Georgetown Diabetes Coalition expanded this model to include communities (vs simply referral to community resources). The coalition believes that productive interactions among informed and activated health systems, prepared and proactive community systems, informed and activated community members (those at risk and with diabetes, community leaders, and community members), along with policies and actions for improving social, economic, and health conditions, are needed to improve community-wide health outcomes and eliminate disparities in health.
Our model, the Community Chronic Care Conceptual Model for REACH Charleston and Georgetown Diabetes Coalition1 includes 4 interacting dimensions that are needed if community-wide diabetes-related outcomes and health disparities are to be improved and eliminated:
1. Informed, activated community members include people with diabetes, their family and people providing social support, community members, and leaders (both formal and informal) who need to be informed and take action to improve diabetes-related care.
2. Informed, activated health systems include area clinics, hospitals, home health agencies, public health departments, pharmacies, medical supply and equipment companies, insurance companies, and payers of care that have effective clinical systems and provide self-management education and support to assist the persons with diabetes to better manage their care.
3. Informed, activated community systems include all community systems that can affect or influence health including churches and faith-based institutions, economics, politics and government, communications, safety and transportation, recreation, education, and the physical environmental system.
4. Policies and actions for improving economic, social, and health conditions at the national, regional, state, and local areas that will result when the previous 3 systems work together to bring about change locally, statewide, and nationally.
As part of our community action plan, we also developed a plan for ongoing activities and for evaluation of the impact and outcomes related to our interventions. Following a literature review of scientific evidence for improving primary and secondary prevention of foot problems and amputations related to diabetes, the coalition adopted the American Diabetes Association's Clinical Practice Recommendations 199915 to guide activities and interventions. The coalition's community members identified how to apply these guidelines within the community. Together, the coalition generated or obtained evidence or data that could be used to evaluate its progress and outcomes.
The coalition's action plan outlined the following annual activities:
1. Review evidence from scientific literature and community and health systems data;
2. Continually integrate new guidelines from the annual American Diabetes Association's Clinical Practice Recommendations15;
3. Identify needed changes in health systems;
4. Identify needed changes in community systems;
5. Evaluate the coalition's progress; and
6. Develop an annual plan that provides continuous improvement and evaluation.
The coalition's goal was to reduce diabetes-related amputations by 5% annually from 2001 to 2005 for a total reduction of 25% within 5 years. In 2000, the coalition acquired data related to hospitalizations for diabetes-related amputations for 1997 from the South Carolina Office of Research and Statistics, South Carolina Budget and Control Board and clinical practice data for 1998 from South Carolina's professional review organization, now known as Carolinas Center for Medical Excellence. The clinical practice data included the percentage of patients with annual hemoglobin A1C, lipids, and kidney tests. The coalition learned that the Behavioral Risk Factor Surveillance Survey data sample was not significant enough to support an annual evaluation of diabetes-related race-specific data by county. At the time of this review, the coalition was not familiar with the annual REACH Risk Factor Survey that was to be conducted by the Centers for Disease Control and Prevention in 2002 to 2007.
The evaluation plan included a qualitative and/or quantitative analysis of data that were collected by the coalition:
1. Number and type of community interventions including educational activities on preventive foot care for health care providers, community groups, and people with diabetes (data sources: coalition records of educational activities, community events, community member-reported activities, and programs and changes in community systems);
2. Annual focus group transcripts and community stories from people living with diabetes from all socioeconomic levels, health care professionals, and community leaders to illustrate community behavior changes (data sources: annual focus group transcript and community stories from news media, reports from community health advocates working with coalition, and stories of community and health systems changes captured from community meetings);
3. An annual review of patient care records to evaluate the changes in clinical indicators of care and the behavior changes by health care providers (data source: outpatient primary and specialized medical records from care providers in 5 health systems). Methods for the patient care record reviews are described in prior publications3,6-7 and criteria for review were based on provider adherence with the American Diabetes Association's Clinical Practice Recommendations, 199915 and any annual updated recommendations for care from the association; and
4. Race-specific data for diabetes-related LEAs to evaluate changes in health status related to diabetes-related amputations, racial disparities, and overall population changes (data source: South Carolina Office of Research and Statistics and the South Carolina Department of Health and Environmental Control (SC DHEC) analyses of hospital discharges).
Health systems interventions to produce informed, activated health systems
Systems, providers, patients, and policies
The coalition reviewed the initial community assessment data from focus groups with health care providers and their patients, policies, and procedures in health care systems, and consulted with the scientific advisory board of the Board of the Diabetes Initiative of South Carolina. As a result of this review, the coalition focused their initial activities on improving the care delivered by health systems and their providers. The goal was to have an informed and activated health system that delivered high quality diabetes care to their patients and the community.
Health systems intervention
Discussions with health systems administrators and their medical directors were conducted and data were collected and presented to demonstrate needed improvements in care. Although the health systems initially focused on improving care delivered by health providers, changes that were implemented in one health system included the following:
1. Developing continuous quality improvement teams focused on improving diabetes care;
2. Scheduling days for routine diabetes follow-up appointments so that the health care team and system are focused on providing care for patients with diabetes;
3. Scheduling group visits for foot care education;
4. Utilizing flow sheets for foot examinations and chart stickers indicating patients at high risk for foot problems;
5. Moving the routine foot assessment/examination from the provider to the triage nurse so that the physician or primary care provider can focus on assessment and treatment of high-risk feet rather than the initial screening examination;
6. Adding a staff podiatrist to examine and treat high-risk patients on a monthly basis, when indicated;
7. Referring for therapeutic shoes, only when indicated (as several of the community medical supply companies were advocating therapeutic shoes for all patients with diabetes and actively marketing these shoes through community groups);
8. Posting signs reminding patients to remove their shoes and socks during a visit so that foot examinations are performed easily.
The initial (and continuous) focus was updating primary care and other health care providers on the latest recommendations related to effective foot care practices for their patients with diabetes.
Data indicated that patients reported a general lack of trust in health systems. However, patients demonstrated confidence in the medical advice that they received from their health care provider. On the basis of this evidence, the coalition determined that health care providers would benefit from increasing their knowledge of the most up-to-date evidence-based guidelines on preventive foot care practices and by providing education of good foot care to their patients with diabetes. On the basis of their self-reported practices, it was noted that many health care providers did not adhere to the recommended guidelines and did not discuss foot care with their patients living with diabetes as part of the preventive health care practice.
To focus on improving foot care and diabetes education provided by health care providers, recognized clinical experts presented continuing education and skill-building activities at the Diabetes Primary Care Symposium that was offered annually each fall in Charleston and attended by a statewide audience. These 1/2- to 2-day symposia included the following:
1. A review of current health care research and clinical care guidelines for the treatment of diabetes, including early intervention to prevent complications that may lead to amputation;
2. Instructions on how to perform a foot examination on a patient with diabetes;
3. Tools to assist health care professionals in providing care and diagnosing foot problems, such as tuning forks and monofilaments for sensory testing of the foot, as well as foot examination flow sheets. They were given wall signs that could be posted in the clinical care facilities reminding patients to remove their shoes and socks in preparation for a foot examination;
4. Practice sessions demonstrating foot examinations and providing education to patients; and
5. Performance audit and feedback.
These continuing educational activities were also presented to health care professionals in REACH health system partner locations. From 2000 to 2008, more than 300 different local physicians, nurse practitioners, physician assistants, nurses, and other health care professionals attended the continuing education activities and some of the providers attended continuing education related to foot care and prevention complications each year. They demonstrated competency by completing foot examinations on patients with diabetes in special clinics set up for demonstration of competencies or in health care sites with their own patients. The partners in each of the health systems were encouraged to form continuous quality improvement teams, with REACH staff participating as team members. Each team met monthly and focused on selecting activities for improving diabetes care and education within their clinical sites and integrating foot care into routine diabetes visits.
In addition to the Annual Diabetes Primary Care Symposia, the College of Nursing developed a 2-day continuing education program on effective foot care practices that was presented by members of the doctoral nursing faculty to more than 225 registered nurses in Charleston and Georgetown counties and more than 2000 nurses nationally. To complete the course, participating nurses demonstrated their competency in foot and nail care with actual patients in a variety of settings. This course now offers a 4-part continuing education activity on DVD providing basic and intermediate foot and nail care education for registered nurses wishing to become certified foot care nurses. The series is available online from the College of Nursing, Medical University of South Carolina16 (http://academicdepartmentsmuscedunursingdepartments/continuingeducation).
Fifteen local African American nurses received tuition from the REACH program and community partners to attend the course. Several of these nurses worked in one of the 5 REACH health systems partners and took an active role in leading the continuous quality improvement efforts within their worksites. In return for tuition, these nurses volunteered their time to provide educational programs to members of their community on preventive foot care. The College of Nursing also offered a wound care certification course providing information on the prevention and care of foot and leg ulcers that lead to amputations. More than 15 registered nurses from the 2 county areas became certified wound care specialists and provided these services in local hospitals, health centers, and the offices of local health care providers.
Patient interventions within the health system
To assist patients with managing their diabetes, each of the health systems focused on improving diabetes self-management education programs that fit the needs of their patients. The REACH diabetes educator and community health advocates developed and implemented patient education programs in those sites without ongoing diabetes self-management education programs. All programs focused on informing and activating community members to take an active role in their care and to ask for routine laboratory tests, to know and interpret their results with their provider, and to know and implement the action steps for effectively managing their diabetes. Special emphasis for taking care of feet was added to the diabetes self-management education curriculum by the REACH educator and community health advocates.
Policy interventions for health systems
In collaboration with the Diabetes Initiative of South Carolina, the South Carolina Department of Health and Environmental Control, Carolinas Center for Medical Excellence, and the American Diabetes Association, policy changes were made throughout South Carolina.
Racial and Ethnic Approaches to Community Health staff and community partners reported changes related to evidence-based foot care practices and education within health care systems in the 2 counties. The Diabetes Initiative of South Carolina, in collaboration with REACH also supported implementing these changes in multiple facilities across South Carolina. The decision to support this change was based on the coalition's quarterly reports to the Board of the Diabetes Initiative on the changes in health systems, providers, and patient outcomes in REACH communities. The report(s) included positive changes that were attributed to REACH activities. The Diabetes Initiative recommended statewide changes including the following:
1. Requesting patients to remove their shoes and socks when preparing for a foot examination. Posting a sign in the examination room asking the person with diabetes to remove their shoes and socks, and ask for foot examination;
2. Conducting foot assessments and identifying foot problems by triage nurses to enable the physician or primary care provider to focus on treatment rather than the initial examination;
3. Utilizing flow sheets for foot examinations and care by both patients and health care providers;
4. Placing chart stickers on medical records to identify patients at high risk for foot problems;
5. Referring for therapeutic shoes, only when indicated;
6. Expanding foot care education in diabetes self-management education programs; and
7. Changing health insurance coverage and reimbursement for foot care and foot care education of patients.
The coalition advocated for policy changes and several changes occurred statewide including the following:
1. Development of a process and program for reimbursement of diabetes self-management education for South Carolina Medicaid patients who received their education from programs that were recognized as quality providers of education;
2. Coverage and referral to diabetes education programs for clients with diabetes served by South Carolina Department of Vocational Rehabilitation; and
3. Changes in South Carolina Code of Laws by the South Carolina Legislature17 that established diabetes education coverage in health insurance policies.
Collectively, these changes increased the quality of diabetes and foot care provided to patients within health care systems in the 2 counties served by REACH and statewide.
Community systems interventions
The coalition was successful in securing local media coverage of their community efforts, including print coverage in newspapers and newsletters and coverage on broadcast media including radio talk shows and the local television cable network. A 30-minute program on foot care was aired on the local cable network more than 34 times over a 3-year period. In addition, coalition members and student volunteers collaborated to provide message points for ministers (through local ministerial alliances with more than 60 member churches) and others to deliver throughout the community. Message points were placed on church bulletin boards, in newsletters and Sunday services bulletins, on the back of church paper fans, and along with oral messages for church leaders and ministers. Examples of each message point were obtained by coalition members for use in the REACH evaluation.
Free ongoing diabetes self-management education programs were conducted in 10 community sites, including worksites, health centers, neighborhood centers, senior centers, and churches. This program offered 5 different classes for diabetes self-care management. Neighborhood "activity and talk about diabetes" sessions were organized for individuals who were not interested in attending traditional organized classes. These sessions featured various types of physical activities, including chair exercises, praise groups, and walking groups, and discussions about diabetes.
Through a REACH partnership with local libraries, a "Learn about Diabetes at the Library" program was partially funded by the National Network of Libraries of Medicine. The library patrons/community members learned about diabetes and foot care while receiving basic instruction on Internet searches using "diabetes" as the search term.
Community leaders and providers working in community systems
Coalition volunteers and community providers conducted community clinics in local neighborhood centers and churches where people participated in foot care demonstrations and foot examinations. When indicated, referrals were made to nurse specialists and podiatrists. Several podiatrists collaborated with the coalition and scheduled appointments to examine patients who were unable to pay the usual fee. These podiatrists examined patients referred by the community health advisors and provided care to the patient for an affordable amount, even if the payment was very minimal.
Within the 2-county area, the REACH Charleston and Georgetown Diabetes Coalition hired 6 African Americans, 5 women and 1 man as full-time lay educators in their communities. In addition, 52 volunteers from faith-based organizations and 100 community volunteers, most of whom lived or worked in largely African American communities, were trained to provide basic foot care education to community groups in churches, community centers, and other community sites. One key focus area was to improve foot care and diabetes self-management among community members with diabetes. More than 150 students enrolled in a health care profession course of study either participated in service learning or volunteer activities that prepared them to provide ongoing foot care activities within partner and community organizations. To assist the REACH community health advisors, both lay volunteers and the health professional student volunteers were trained to deliver health promotion modules on foot care education and activities for people living with diabetes. In addition, the REACH principal investigator, a diabetes educator, and several of the community health advisors developed a lesson plan that included a supporting module and slide series entitled "Check Yourself to Protect Yourself: Take Care of Your Feet."18 Currently, the module is available free of charge online at http://academicdepartments.musc.edu/reach/. The module includes instruction on foot care, cutting nails to prevent foot problems, selecting appropriate footwear, daily feet check to identify early warning signs, using the monofilament to check for loss of feeling in the feet, when to notify a health care provider, and methods for the prevention of foot problems. The REACH community health advisors, lay volunteers, and student volunteers were trained to deliver the educational module activities. The information has been presented to more than 6000 people in churches, congregate meal sites, senior centers, day care centers, worksites, and libraries. Each participant received a monofilament and was taught how to conduct sensory testing of their feet.
To accompany the educational module for lay leaders, materials were developed to assist patients with managing their own diabetes. These materials included My Guide to Sugar Diabetes, a book designed for people with diabetes and members of their support systems, along with Gold Card for Diabetes, a self-management written record for patients to track their ongoing care and maintenance goals.19My Guide to Sugar Diabetes features pictures of local people practicing diabetes management habits.20 Both are also available online at http://academicdepartments.musc.edu/reach/.
The REACH Charleston and Georgetown Diabetes Coalition and a local coalition in each of the 2 counties focused on networking and advocacy to produce changes in community systems, while educating the community about the burden of diabetes and the prevention of complications. A series of posters on diabetes information, healthy eating, and foot care were developed collaboratively by the partners. The posters were then disseminated to other community groups and posted in health care facilities, libraries, churches, and neighborhood centers. Each year, one of the coalition partners, the Tri-County Black Nurses Association, offered "Bubblin Brown Sugar," a training session for lay volunteers and health care professionals. The Greek sorority, Gamma Omicron chapter of Alpha Kappa Alpha, offered "Choose to Live," an education program for middle-aged African American women that focused on the prevention of diabetes complications. The Trident Urban League recently joined the coalition and sponsored a diabetes education and awareness media campaign on local city buses.
People with diabetes and their support systems
The coalition and its partners reached more than 45000 African Americans with educational messages about diabetes that helped enable them to better understand the day-to-day management of the disease, including the importance of effective foot care. As a result of this community intervention, an important lesson was learned. Diabetes education and outreach must be offered through multiple channels to meet the needs of community members, including scheduling classes that are accessible and available to people where they meet during the day, in the evening, and on the weekend.
A summary of health systems and community interventions is listed in Table 2.
|Table 2. Summary of Methods for Improving Diabetes Foot Care and Decreasing Amputations|
To better understand how our activities influenced or were associated with impact and outcomes, our evaluation was a combined effort of the REACH team, their partners, and coalition members working together to collect, analyze, and present data for the percentage of patients receiving foot examinations and LEA rates for people with diabetes. The impact and outcome evaluation was coordinated by the College of Nursing at the Medical University of South Carolina. The medical chart audits were performed by the College of Nursing, and the South Carolina Department of Health and Environmental Control's Chronic Disease Epidemiology team analyzed the quantitative data related to amputations. The amputations data were collected by the South Carolina Office of Research and Statistics. The REACH Charleston and Georgetown Diabetes Coalition successfully reached health care professionals and people with diabetes and their support systems with information on diabetes and the prevention of LEAs. Changes in policies within health care and community systems were noted by people living with diabetes, health professionals, and community leaders and were documented by REACH evaluators who reviewed patient charts, quality improvement meetings and minutes, and epidemiological data. People living with diabetes reported in focus groups that they were receiving improved care by their providers and that they were learning to ask questions and make suggestions for improving their care.
Community leaders made the following comments about the work of the coalition:
REACH has made a difference for our community-we offer classes on diabetes, computer and exercise classes to learn about diabetes, and even have community gardens to help people eat healthier foods. We know what to do to prevent many of the problems caused by diabetes, especially foot care and amputations.... More people know what to do to better manage their diabetes and take care of their feet; they monitor their sugar, check their feet, and even tell their doctor what they need....
"Our community has changed the way we take care of diabetes...ministers tell us how to take care of our health, churches are serving healthier foods, neighborhoods are building walking trails and forming exercise groups....." Quote from local neighborhood president and policy maker.
The coalition examined changes in foot examinations in people with diabetes and diabetes-related LEAs to determine the impact and outcomes associated with the program. On the basis of an analysis of chart audits, foot examinations conducted by REACH health care system partners increased significantly for both genders of African Americans and whites with diabetes, as shown in Figure 2.
|Figure 2. Charleston and Georgetown Counties Annual Foot Examinations by Race and Gender. Data Source: Chart Audits (2000 to 2009) REACH Charleston and Georgetown Diabetes Coalition. Source: C. Jenkins, Principal Investigator, REACH Charleston and Georgetown Diabetes Coalition.|
Annual foot examinations for all patients with diabetes who visited their health care provider at least once each year were more than 90% for African American males and females and more than 85% for whites in 2008. Although foot examinations were initially higher for African Americans than for whites, other aspects of health care such as diabetes control were lower for African Americans and these also influence diabetes complication, foot problems, and amputation rates. From 1999 to 2008, increases in percentage of African American patients with diabetes receiving an annual hemoglobin A1C test (that evaluates blood glucose control over 2 to 3 months) increased from 76.8% to more than 97%, and the initial disparity for African Americans (as compared with whites) of almost 10% was eliminated. Annual lipid testing increased from 47% to almost 90%, and the disparities decreased by about 20%; annual kidney testing improved from 13% to 56% and the initial disparity of almost 50% was eliminated. These changes were due to improvements in health systems (such as registries with audit and feedback-reminder systems) and patients asking their providers about their "numbers for control of diabetes." Continuous quality improvement teams are in place in the community health centers and hospital clinics and changes are being institutionalized into ongoing policies and procedures. For example, policies are in place so that nurses now screen patients for foot problems and reminder systems are in place to prompt providers to order annual laboratory tests.
Based on recommendations from the South Carolina Office of Research and Statistics at the State Budget and Control Board and the South Carolina Department of Health and Environmental Control, Office of Chronic Disease Epidemiology and Evaluation, the coalition chose to record and report outcome data by 2 methods: (1) rates of amputations per 1000 diabetes hospitalizations and (2) rates of amputations per 100 000 population. This approach was taken because of the inadequate sample size from the Behavioral Risk Factor Surveillance Survey to determine stable and reliable rates of diabetes prevalence by county. Data on diabetes-related amputations are shown in Figures 3 and 4. Figure 3 shows the decrease in amputations based on the population rates. Figure 4 shows the changes based on hospitalization rates for persons with diabetes.
|Figure 3. Charleston and Georgetown Counties Lower-Extremity Amputation-Rates by Race. Data Source: South Carolina Hospital Discharge Data (1999 to 2008), South Carolina Office of Research and Statistics. Source: P. Myers and K. Heidari, Office of Chronic Diseases Epidemiology and Evaluation, Bureau of Community Health and Environmental Control, South Carolina Department of Health and Environmental Control.|
|Figure 4. Charleston Georgetown Counties Lower-Extremity Amputation-Rates per 1000 Diabetes Hospitalizations. Data Source: South Carolina Hospital Discharge Data (1999 to 2008), South Carolina Office of Research and Statistics. Source: P. Myers and K. Heidari, Office of Chronic Diseases Epidemiology and Evaluation, Bureau of Community Health and Environmental Control, South Carolina Department of Health and Environmental Control.|
Since the Centers for Disease Control and Prevention funding of the REACH Coalition in 1999, amputation rates have decreased significantly in both Charleston and Georgetown counties. The rates in 2008 among African Americans decreased from 38.7 in 1999 to 21.7 per 1000 diabetes hospitalizations. This represents a 44% decrease in rates in African Americans as compared with a 22% decrease in whites.
When looking at LEA rates per 100000 population, incidences in African Americans decreased from 110.6 in 1999 to 70.3 per 100000 population in 2008. This represents a 36% decrease in rates in African Americans compared with a 31% decrease in whites. Reduction in LEA between 1999 and 2008 was statistically significant (P < .001) among the population, and among both whites and African Americans when analyzed by both rates of LEAs per 1000 hospitalizations (P < .001) and rates of LEAs per 100000 population (P < .001).
Although the community-based interventions occurred largely in African American communities (with some whites attending activities and some activities replicated by other groups in largely white communities), the health system interventions were implemented for all racial and ethnic groups including whites. Based on both documented evidence and informal reports, many of the REACH interventions such as the REACH foot care module for communities and provider education related to foot care were replicated in other communities across South Carolina.
Also, in 2007, LEA rates in African Americans increased as shown in Figures 3 and 4. Our coalition evaluators noted that in 2006, there were budgetary restraints in several health systems that resulted in staff changes and reductions. Specifically, 3 health systems lost their nurse champions for foot care, and in one health system, the foot care center was closed. In addition, in 2006 to 2007, because of budget reductions and a change in priorities for funding for REACH, our coalition lost 2 community health advocates who had worked with the community to improve foot examinations and care.
The LEA rate for South Carolina also decreased; however, the decrease was not as significant as that for Charleston and Georgetown counties. Lower-extremity amputations rates statewide in South Carolina per 1000 diabetes hospitalizations in African Americans decreased from 35.3 in 1999 to 21.5 per 1000 diabetes hospitalizations in 2008. This represents a 39% decrease in African Americans' rates compared with a 31% decrease in whites. Considering rates per 100000 population, statewide LEA rates in African Americans decreased from 90.1 in 1999 to 61.5 per 100000 population in 2008. This represents a 32% decrease in African Americans' LEA rates compared with a 20% decrease in whites. Reduction in LEA between 1999 and 2008 was statistically significant (P < .0001) among the population, and among both whites and African Americans when analyzed by both rates of LEAs per 1000 hospitalizations and by rates of LEAs per 100000 population. The community-level interventions have an impact of lowering LEA rates based on 100000 population more so than the state level (P < .05). However, the reduction in LEA rates per 1000 hospitalizations over time is not statistically different between the 2-county region and state level. Behavioral Risk Factor Surveillance Survey data are not adequate to determine county-level diabetes prevalence; thus, we are unable to determine whether the program has achieved the Healthy People 2010 goals for diabetes related amputations.
Lower-extremity amputations rates have improved in both African Americans and whites; however, the disparity continues between the number of LEAs in African Americans and in whites. Little has changed over the past decade. The rate of LEAs per 100000 population is approximately 4 times greater for African Americans than the rate for whites. The population-based rate of diabetes hospitalizations among African American is approximately twice that of whites. This indicates that 4 times more African Americans are likely to have an LEA than whites.
Estimates of costs and cost savings
Decreases in amputations contribute to significant costs savings for people with diabetes and an improvement in their overall quality of life. In 2008, SC DHEC reported that the costs associated with 22 amputations in Georgetown county were $1204200 and $4492300 was the costs associated with 105 amputations in Charleston county.21 According to these statistics, the average hospital cost in 2008 for one LEA was $54736 and $42783 in Georgetown county and Charleston county, respectively.
In addition, the SC DHEC data indicated the preventive care by primary health care providers to persons living with diabetes are reimbursed at lower rates by health insurance companies. In stark comparison, health insurance companies reimburse the soaring costs associated with amputations.
At an April 14, 2009 town hall meeting in Portsmouth, New Hampshire, President Obama made this comparison:
Let's take the example of something like diabetes... a disease that's skyrocketing, partly because of obesity, partly because it's not treated as effectively as it could be. Right now... if a family care physician works with his or her patient to help them lose weight, modify diet, monitors whether they're taking their medications in a timely fashion, they might get reimbursed a pittance. But if that same diabetic ends up getting their foot amputated, that's 30,000, 40, 50,000 dollars....... Well, why not make sure that we're also reimbursing the care that prevents the amputation. Right? That will save us money.
LIMITATIONS AND CONCLUSIONS
This REACH Charleston and Georgetown Diabetes Coalition's case study of interventions and changes in amputation rates of African Americans with diabetes has many limitations. One of the major challenges is the selection of a denominator for calculating the amputation rates; others include measurement issues, the contribution of external influences, and the influence of each intervention on observed outcomes. In addition, the activities and materials developed by REACH were shared and implemented throughout the statewide network by the Diabetes Initiative of South Carolina. Examples include My Guide to Sugar Diabetes, which was collaboratively developed by SC DHEC Diabetes Prevention and Control Program, one of the coalition partners, and distributed statewide, and "Check Yourself to Protect Yourself: Take Care of Your Feet" was shared with diabetes community coalitions throughout the state (and across the United States and in several countries outside the United States). All Diabetes Initiatives of South Carolina Board and Council members received copies of the training materials and shared them with others throughout the state. All of the materials on our REACH Web site were available to anyone who visited the Web site. Groups throughout the state that requested the materials were encouraged to download them from the Web site. However, no methods were in place to track the use of the Web-based materials. In addition, comparison of Charleston and Georgetown County amputation rates to statewide amputation rates (that included 2 counties) lessened the differences between statewide and Charleston and Georgetown county rates.
However, significant changes occurred in community systems (church and community messages about diabetes) and health systems (improvements in foot examinations and diabetes care, registries), and improvements in policies for diabetes control and prevention of complications (state law requiring insurance companies to provide diabetes education and supplies, and a policy establishing minimal level of care for people with diabetes who visit their provider), especially those related to amputations (foot examinations).17 Many of the changes became institutionalized in the health care systems and communities where initial changes were made. In addition, the cost savings related to amputation prevention are significant.