Diabetes care : provider disparities in the US Appalachian region

Introduction: Diabetes is a devastating and growing problem in the USA and throughout the world. Parts of Appalachia, especially the most rural and economically ‘distressed’ areas of the region, have disproportionately high levels of diabetes incidence and have had long-standing problems in healthcare access. Purpose: Little is known about the status of public health infrastructures and expertise available to address the diabetes epidemic, whether in Appalachia or elsewhere. This research examines the availability of professional diabetes care in Appalachia, including the economically distressed areas of the region. Methods: A 2006 cross-sectional survey of healthcare providers in the Appalachian Region identified diabetes service needs and availability in Appalachian healthcare facilities. Survey data and socioeconomic data were combined as a means to assess intraregional variation in service availability. Results: Participants perceived that diabetes prevalence was growing in Appalachia and that they were seeing increasing numbers of persons with diabetes. Healthcare facilities in the region rarely employed specialized health professional providers and the expertise concerning diabetes in some clinicians may be limited. Conclusions: The current and growing diabetes problem in Appalachia underscores the need for appropriate diabetes services and health professionals acquainted with current standards in diabetes care. Such problems in Appalachia have long been identified and linked with insufficient healthcare resources. The identification of ways to assure that local clinicians have current knowledge of diabetes standards of care is warranted.


Introduction
Diabetes is one of the top 10 causes of death in the USA 1 .
The American Diabetes Association estimates that 7.8% of the US population has the disease 2 .Moreover, diabetes prevalence rates in the USA, especially for type 2 diabetes, are growing 2 .For example, the Centers for Disease Control and Prevention indicate that the incidence has grown from 5.7 million in 1982 to 17.9 million in 2007.As diabetes incidence continues to rise, this challenging problem will require increased attention for early identification and optimal management.Negative health outcomes are often associated with, among other things, race, poverty, and inadequate access to health care [3][4][5] .Increased diabetes prevalence has been associated with higher levels of poverty [6][7][8] , and some minority populations appear to be at greater risk for developing diabetes 1 .Diabetes incidence also has a geographic dimension.While few epidemiological studies have assessed variations in diabetes prevalence and care between urban and rural areas, rural populations have been known to have a higher incidence of type 2 diabetes, independent of race 9 .Nationally, differences have been found in diabetes care when comparing rural with urban US populations, within and across states and by region 10 .
Appalachia is a relatively rural area historically plagued by high poverty rates, elevated incidence of some diseases, and relatively inadequate levels of health care [11][12][13][14][15][16][17] .At the time this study was conducted, the region, as politically defined, included all of West Virginia and parts of 12 other states, or a total of 410 counties (Fig1) 16 .Appalachia can be understood as the only multi-state US region ever targeted by the federal government for a specific development program designed to improve socioeconomic conditions 14,16 .Despite these efforts, which have included projects ranging from building highways to job training programs, problems persist, particularly in the rural parts of the region.In states such as Kentucky, Ohio, West Virginia, and Mississippi, relatively large pockets of rural areas lag behind much of the nation in levels of income, employment, educational attainment, and poverty(Fig1) 12,16,18 .Additionally, rural areas of Appalachia have historically had inadequate numbers of healthcare professionals, types of health service delivery options, and have experienced disproportionately high morbidity rates for some diseases, relative to much of the nation 11,13,14 .
Research suggests that diabetes rates are relatively high in Appalachia, especially in the region's rural, economically 'distressed' areas.Three studies conducted by the Appalachian Rural Health Institute (ARHI) have been tracking the diabetes rates in Appalachian Ohio counties.
The ARHI I study, a random telephone survey based upon a modified Behavioral Risk Surveillance Survey (BRFSS) conducted in 4 Appalachian Ohio counties during December 2003, found that 8.3% of the surveyed population had diabetes, a rate approximately one-third higher than the national average at the time 19 .A similar ARHI II 2006 follow-up study in 7 other Appalachian Ohio counties identified a diabetes prevalence rate of 11.3%, which was also higher than national and state averages 20 .The latest ARHI III study, initiated in late fall 2008 with 9 different Ohio counties, found the diabetes rate to be 12.5%, which exceeds the Ohio (9.5%) and the national (8.6%) 2007 BRFSS rates.Research not only indicates that diabetes is a relatively profound problem in parts of Appalachia, but over the past few years the disease incidence in some parts of the region has been growing faster than the national average 2,19,20 .
Overall, it is important to recognize that life experiences can differ dramatically not only across the region, but also within individual communities.While residents of some urban Appalachian areas have access to numbers of healthcare professionals and specialists reflective of or better than national averages, in the more impoverished, rural parts of the region healthcare practitioner shortages have existed for decades 11,13,14,21 .Similar to the circumstances throughout much of rural America, however, many individuals, particularly in Appalachia's economically distressed areas, lack adequate transportation to access distant healthcare options, lack health insurance, and have limited opportunities for jobs that provide health insurance [22][23][24] .Similarly, modifiable risk factors such as obesity, tobacco use, and physical activity levels have been strongly associated with health problems for some members of the population, as has a lack of trust in healthcare providers and limited healthcare knowledge 25 .
The status of health systems and professional expertise available to address the diabetes epidemic, whether in Appalachia or elsewhere, is poorly understood.The longstanding problems of personal health and access to healthcare services in much of Appalachia, along with the context of growing diabetes rates in some parts of the region, are of concern.Moreover, research indicates that residents of rural areas have unique diabetes care needs and risks 26  Surveys were mailed to all health departments (HD), Federally Qualified Health Centers (FQHC), and certified diabetes educators (CDE) who could be identified in an exhaustive search of internet-based resources.A letter accompanying the surveys sent to the HD and FQHCs asked for the person most knowledgeable about diabetes at the facility to complete the survey, while those sent to the CDEs simply asked that they complete the survey.All mailings included an informed consent form and a stamped, returnaddressed envelope.Based on financial resource limitations, the research design included only one mailing.As discussed will be discussed, this did not appear to introduce a bias that would affect the interpretation of survey results.In all, a total of 850 surveys were mailed; a total of 197 surveys were returned, but only 182 surveys were fully completed and used in this analysis.Thus, the total return rate of surveys was 23.2% with 21.4% useable surveys.
Many FQHC sites received multiple surveys, but completed only one.For example, several FQHC sites had multiple sites (n = 43) where 2 to 12 agencies were affiliated.At least one survey was returned from 17 or 39.53% of these multisites.Data about the region came from 152 of the then 410 Appalachian counties (Table 1

Results
Nearly all respondents perceived there had been a growth in type 2 diabetes over the past 5 years (Table 3).About onethird of the respondents believed that the numbers of people with type 1 diabetes had also increased, though the majority reported stable numbers for type 1 diabetes.Corresponding with the perception that type 2 diabetes prevalence had increased were the observations that the number of children diagnosed with type 2 diabetes and individuals with undiagnosed diabetes were increased when compared with 5 years earlier.All trends were similar across distressed-at risk as well as in non-distressed at risk locations, with no statistically significant differences in perceptions of diabetes prevalence when comparing these 2 types of locations.
Slightly more than one-quarter of the respondents reported that their facilities were seeing more than 20 patients with diabetes weekly (Table 4).A higher percentage from distressed/at-risk locations indicated that they saw more than 20 patients with diabetes weekly.Similarly, a higher percentage of respondents from these facilities indicated that they saw fewer than 5 diabetic patients weekly.However, no statistically significant differences in the estimated number of persons diagnosed with diabetes seen weekly were observed by location.
As indicated, most indicated that healthcare facilities did not employ specialists important to diabetes care (Table 5).
Slightly more than one-third of the facilities employed a CDE, while only approximately one-third employed noncertified diabetes educators.More than 85% of the facilities did not employ an endocrinologist.While facilities in distressed/at-risk areas were as likely as facilities in nondistressed/at-risk areas to employ medical professionals such as full-time physicians and nurses, they were less likely to employ specialists vital to the care of diabetes.Endocrinologists and CDEs were statistically significantly less likely to be employed in facilities located in distressed/at-risk areas, compared with facilities in nondistressed/at-risk areas.A total of 7.5% and 24.3% of the facilities in distressed/at-risk locations employed endocrinologists and CDEs, respectively.Fewer than 20% of facilities in the non-distressed/at-risk facilities employed endocrinologists, and less than half of the facilities employed CDEs.The final question on the survey asked respondents to provide comments about specific needs or areas they believed needed attention regarding diabetes care in their community.While some participants failed to answer this question, about three-fourths of them provided some response and the comments made were similar across all participant groups (ie CDEs, FQHC, HDs).Of those who responded, most were concerned with the inadequacy of diabetes care provided.These participants often noted issues such as the lack of early diagnosis, difficulties in specialist referrals, and problems with poorly coordinated care between hospitals, community, and home settings.Lack of diabetes educators, availability of dieticians or nutritionists, and enough endocrinologists was most often cited as a need, regardless of whether the area was a distressed or nondistressed county.
Respondents who made written comments from FQHC and HDs were most likely to note needs for nurses and physicians who were more knowledgeable about diabetes and the care standards.approximately half of the responding HD participants from all Appalachian regions identified that diabetes education was most often provided by registered nurses who were often ill-prepared with current treatment knowledge.Approximately one-quarter of the participants reported that little to no attention to diabetes occurred in their counties, and that specialists who could provide any type of prevention or diabetes self-management education were lacking.
Of the respondents, approximately half of the CDEs, half of those from HDs, and about one-third of the FQHC participants indicated concerns about diabetes selfmanagement, prevention, and the inadequate information physicians gave to those diagnosed with diabetes.For example, one HD participant said physicians need to 'stop telling patients they are "borderline" and give them meal and exercise plans to prevent getting diabetes'.Similarly, a concern raised by these CDEs and HD participants pertained to physician, patient, and community misunderstandings about insulin treatment.One CDE said: Often times, patients are newly diagnosed with type 2 diabetes, given prescription for medications or insulin and sent home with little or no education.Many patients have the misconception that if they 'stay away from sweets' that they are managing their disease.
Other problems mentioned often included needs for early referral to formal diabetes education classes, better and more comprehensive community prevention efforts, and healthy lifestyle management.A few participants from all three groups indicated that increased interdisciplinary education for inpatients and ongoing diabetes education for those already encountering complications was needed.A few from FQHCs and HDs specifically noted a lack of adequate facility space for education, inadequate care continuity, and limited teaching resources.Approximately one-third of the responding participants from all groups indicated that inadequate reimbursement for diabetes education and prevention programs were reasons for the lack of appropriate care services availability.We lost funding for our diabetes program several years ago.We have three clients that we continue to provide services for because we were unable to find an alternative source for meds.These patients are managed by private MDs.The patients cannot afford to buy insulin.We have no hospital, few MDs here and the closest care is 30 miles away.Transportation is always an issue.
Responses from the majority of participants indicated that many diagnosed with diabetes did not receive diabetes education, had no or inadequate coverage for selfmanagement supplies, and lacked needed finances for follow-up medical care.

Discussion
This research was designed primarily to identify providers' perceptions of the prevalence of diabetes and the availability of healthcare professionals involved with diabetes care at healthcare facilities located in Appalachia.Combining survey-based primary data with secondary data offered the opportunity to scrutinize such service availability based on socioeconomic conditions.Survey results suggest that providers perceived an increase in type 2 diabetes prevalence in Appalachia over the last 5 years.This perception is supported by national survey data that indicates diabetes prevalence rates are rising 2 .
Amidst growth in numbers of people with type 2 diabetes, availability of diabetes specialists is limited in Appalachia, with relatively greater shortages found in distressed/at-risk areas of the region.In short, at a time when diabetes rates are growing rapidly, and in a region where research has demonstrated that diabetes is apparently growing at a rate faster than the national average 19,20 , the study participants perceived that the adequacy of diabetes expertise was limited in the facilities where they were employed.When access to expert diabetes care is lacking, persons with diabetes may be referred to a specialist in another county, but while specialists might assist with diabetes management, few are engaged in prevention efforts.Therefore, innovative solutions to the growing diabetes related problems are needed to address unique county needs.This research has demonstrated that age-adjusted mortality is worse in rural areas with physician shortages 29 .Similarly, diabetes research demonstrates that physicians in rural areas are less likely to follow the American Diabetes Association standards of care 30,31 , reduced provider monitoring of patient self-care results in relatively poor diabetes outcomes 32 and rural residents are more likely to receive care from primary providers than from diabetes specialists 33 .The present research identified similar trends.A long history of difficulties associated with attracting specialized healthcare professionals to the rural and economically distressed areas of the Appalachian region suggests the importance of local healthcare practitioners' current knowledge about the best evidence for diabetes prevention and self-management.
Findings also indicated that insufficient staffing and facilities for diabetes care may not be a problem that plagues rural, economically distressed areas of Appalachia alone.While statistically significant differences in the availability of diabetes specialists were demonstrated when comparing distressed/at-risk locations with non-distressed/at-risk locations, it was nonetheless apparent that many facilities in non-distressed/at-risk locations had similar problems.A reasonable question is: Are things worse in Appalachia when compared with the rest of the USA, or is Appalachia reflective of the USA as a whole?Shortages of diabetes specialists are prevalent throughout much of Appalachia, regardless of socioeconomic conditions.Amidst concerns about low levels of diabetes specialists in distressed/at-risk locations, circumstances are only marginally better in Appalachia's non-distressed/at-risk locations.However, most persons diagnosed with diabetes do not immediately seek care from an endocrinologist or other specialist and often only seek this care when disease complications occur.However, access to expert primary care clinicians knowledgeable about diabetes is of utmost importance.
Finding better ways to address the existing care gaps in Appalachian communities is essential.Closer examination of the effectiveness of community programs, volunteer involvement, and citizen action that focuses on diabetes prevention could all be useful.
Study participants' qualitative responses provide specific information that assists understanding of the specific care deficits linked with diabetes in the region.Studies have found that a lack of monitoring diabetes patients' self-care, low compliance with standards of care, and low utilization of diabetes specialists all affect diabetes patient outcomes in rural areas 30,32,33 .However, inadequate diabetes care coordination, challenges in diagnosis and care management, and delayed care for uninsured or underinsured individuals suggests that a broad approach to problems is needed.For example, pre-professional and continuing education for health professionals must address ways to fill diabetes care gaps.An interdisciplinary coordinated council to address diabetes and its associated risks could address unique county problems.Involvement of local citizens in volunteer work could be useful in drawing attention to healthy lifestyles and diabetes prevention.It seems essential that health professionals in the Appalachian region pay close attention to local concerns and find ways to collaborate in order to deliver appropriate and timely coordinated diabetes care that includes early diagnosis, optimal care management, and improved care outcomes.
It was noted earlier that Appalachian populations might be at as great a risk for type 2 diabetes as other national high-risk groups.Inadequate coordinated medical care could mean that too little care is provided, or that care is provided too late to prevent the disease or extensive co-morbidities, higher medical costs, and earlier mortality.Greater attention is needed for the uninsured or underinsured population that needs earlier medical diagnosis and appropriate selfmanagement education.Greater diabetes awareness and its linked risk factors are public health concerns and greater attention from local health departments seems warranted.Increased diabetes risks beg for innovative solutions to problems that will not be easily or quickly resolved.
Crosstabs of categorical variables were developed and χ 2 tests used to test for independence of variables were completed.Significance in the associations between distressed/at-risk location and the perceived growth of diabetes incidence as well as the estimated number of diabetes patients seen weekly were tested with Pearson's χ 2 test.Due to low expected values for some cells in the tables and related unequal cell distribution, Fisher's exact tests were used to test for statistically significant differences between healthcare professional availability and location.One-way statistical tests were utilized with the assumption that the non-distressed/at-risk locations would be more likely to have specialized healthcare professionals when compared with distressed/at-risk locations.For all analyses, tests with p-values of less than 0.05 were considered statistically significant.As is typical with survey research, the number could vary slightly in relation to any individual question due to issues such as non-response or the applicability of questions to some respondents.A qualitative assessment of the final survey question is also presented in this article as a means to provide additional clarification of the findings.The final item invited participants to provide a short answer response to the following question: 'If you could change anything in your organization or community pertaining to the care of persons with or at risk of type 2 diabetes, what would it be?' Content analysis of the responses to this question was completed and thematic responses identified.Based on the utilization of enumeration and coding techniques that are typical in qualitative data analysis, the results section provides an overview of common themes identified in the responses.

Table 1 : Overview of returned surveys
).No surveys were returned from FQHC in Alabama, none of the HD in Maryland returned surveys, and no CDE surveys were returned from the states of Maryland or Mississippi.Because the survey involved only a single mailing, the response rate can be seen as reasonable.Moreover, and as indicated in Table1, the returned surveys can be understood as sufficiently representative of the population at large.To evaluate diabetes service availability in Appalachia, statistical analyses were performed in relation to the dichotomized distressed/at-risk status variable.As suggested, survey questions addressed a number of issues related to perception of diabetes incidence and care.Statistical analyses examined respondent perceptions about the growth of diabetes incidence locally; estimated number of diabetic persons seen weekly where the respondent was affiliated; and the types of healthcare practitioners, including endocrinologists and certified diabetes educators, employed.

Table 2 : Median county-level socioeconomic characteristics by location
†Authors' calculations were based on various original data sources.Due to the nature of the variable 'percent living in metro area', this value was based on summing all values.For other calculation detail please contact the authors.††The 'White alone' characteristic is based on the US Census question where respondents self-identify their race.'White alone' describes respondents who have marked the 'white' option only on the census form.

Table 5 : Healthcare practitioners employed by location CDE
, Certified diabetes educator; DE, diabetes education; FT, Full time; LPN, licensed practical nurse; LVN, licensed vocational nurse; RN, registered nurse.†P-values and odds ratios based on comparisons between distressed/at-risk facilities and non-distressed/at-risk facilities.
All participant groups identified concerns about lack of health insurance or under-insured individuals.One health department participant summarized what most participants responding to this question indicated: number of limitations related to this study should be noted.First, exploratory findings from the use of a selfreport instrument without established reliability and validity is always open for scrutiny.Thus, it should be noted that the perceptions reported may not be broadly representative. A