Methods

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Community-Based Diabetes Advisory Councils

The eight original, randomly selected Michigan communities have been previously described [1, 2]. In four communities, two large and two small, the MDRTC encouraged the formation of a diabetes advisory council. Council members included health professionals (physicians, nurse educators, dietitians, pharmacists, and so forth) and patients and patients' families, all of whom had a special interest in diabetes. The four community-based councils totaled approximately 60 members. The councils, which met three times per year, were the focal point in their respective communities for ongoing patient assessment, problem analyses, and intervention planning directed by the MDRTC. The councils reviewed the clinical, psychosocial, and educational status of many community-based diabetic patients, defined trends in diabetes care in their area, and planned interventions to address the identified problems [2]. Through the collective deliberations of these councils over 13 years, community barriers to optimal care were identified.

Patients

The patient care data reviewed by the councils from 1988 to 1994 were derived from three studies done by the MDRTC (Table 1). Patient assessments included clinical, biochemical, educational, psychosocial, and health services aspects of their care and its outcome. Data from the second study, which was based on randomly selected patients in eight communities analyzed from 1990 to 1991, were compared with a similar analysis done in the same eight communities 10 years earlier. These changes in diabetes care and education at the community level during the 1980s have been previously reported [1]. Data relevant to the intensity of care for patients with non–insulin-dependent diabetes mellitus (NIDDM) from all three studies (1988 to 1994) are presented here.

Patients in the groups shown in Table 1 were identified as having NIDDM using the stimulated C-peptide criteria employed in the Diabetes Control and Complications Trial (DCCT) [3]. The 1056 patients studied here were not insulinopenic by C-peptide criteria. The mean age in all three groups was the same—63 years. The percentages of women in groups 1, 2, and 3 were 53%, 63%, and 55.8%, respectively.

Results

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The frequency of office visits to a primary care physician for diabetes management for the three groups of patients with NIDDM is shown in Table 2. The frequency has decreased substantially for both the group taking insulin and the group not taking insulin. Because standard deviations among the three groups were not equal, the Kruskal-Wallis test was used to determine differences in the number of physician visits. Comparisons were made for all patients with NIDDM, for patients with NIDDM taking insulin, and for patients with NIDDM not taking insulin.

Patient use of three of the services considered by most authorities [4-6] as essential to diabetes care—diabetes education, diet counseling, and retinopathy screening by an ophthalmologist—is shown in Figure 1. Only 33% (48% of those taking insulin and 24% of those not taking insulin) of the patients in the study had received all three basic services at least once in their lifetime; 15% (6% of those taking insulin and 20% of those not taking insulin) had never received any of these services.

View larger version (21K): [in this window] [in a new window]   Figure 1. Percentage of patients using the three basic services considered essential to diabetes care—diabetes education, diet counseling, and retinopathy screening by an ophthalmologist. NIDDM equals non–insulin-dependent diabetes mellitus.

When given objective data about the level and kind of care and education provided to diabetic patients in their communities, the diabetes advisory councils confirmed what they knew experientially—the care provided to patients with NIDDM who had no complications was not very intense and was, in addition, fragmented and incomplete. The councils' continuous review, analysis, and discussion of the data about the status of the 1056 patients resulted in identification of the principal barriers to the delivery of optimal care for patients with NIDDM at the community level. The three main barriers identified were that 1) NIDDM is not considered or managed as a serious problem by most physicians and their patients; 2) the genetic basis for and refractory nature of obesity are not generally appreciated; and 3) as a complex, multisystemic chronic illness, diabetes fits poorly in a health care delivery system designed to deal with acute and episodic illnesses.

Discussion

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The asymptomatic character and long latent period between onset of hyperglycemia and overt diabetic complications have apparently resulted in perceiving NIDDM as a mild illness, largely attributable to lifestyle factors that many physicians believe patients will be unwilling to modify substantially. Patients are told that they have a "touch of sugar" and that they should "watch their diet" and "lose some weight." The confused patient alternates between taking comfort in the physician's description of the mild character of the condition and feelings of guilt that they are not taking care of themselves properly. The sustained, conscientious effort required, both by physician and patient, to treat NIDDM intensively is not motivated in this setting.

The issue of obesity is even more serious. Most patients with NIDDM are obese, approximately 80% in some groups [7]. The genetic basis for this obesity is just starting to be recognized by the scientific community [8, 9]. Most physicians in our study communities believe that obesity is the undesirable consequence of an inappropriate and unhealthy lifestyle. Added to this unscientific conclusion is the highly judgmental attitude that this lifestyle can be easily changed (and undesirable consequences reversed) if the patient only exerts the self-discipline to do so. Use of diet therapy by the primary care physicians in our studies has been discouraging for both physicians and patients. The recommended diet programs have often failed to achieve even modest but sustained weight loss. The consequences of this failure include decreased patient self-esteem, blame by health professionals, and the creation of a counterproductive relationship between patients and health care providers. This situation could be prevented if both health professionals and patients better understood the cause, pathophysiology, and refractory nature of obesity—and, in particular, the difficult task most patients face when attempting substantial and sustained weight loss.

The third major barrier to optimal care of the community-based patient with NIDDM is the system that attempts to provide this care. Because of the generally asymptomatic character of diabetes, particularly NIDDM, and the long lead time between the pathologic effects of hyperglycemia and the onset of clinically recognizable complications of sustained hyperglycemia, diabetes care should be a long-range, broad-scale secondary prevention program. However, the U.S. health care system is designed (and reimbursed) primarily for acute and episodic care for both the hospital and ambulatory phases of illness. The system is built around the physician, is largely symptom driven, and does not provide preventive services well or consistently [10-13]. The standard physician office visit for a patient with as yet uncomplicated NIDDM is billed (whether to the patient, insurance company, or managed care organization) as a "routine" primary care encounter. The length of the visit is, by economic necessity, limited to 12 to 15 minutes. Consequently, patients with NIDDM receive 45 to 60 minutes of physician care per year, not at all sufficient for the complex, multi-systemic, and multidimensional disease that diabetes is. In addition, the availability of and reimbursement for health professionals other than primary care physicians does not approach the need for their involvement in an intensive care system for patients with NIDDM. In short, the acute care system provides a fragmented and insufficient level of care that is inappropriate for a multi-systemic chronic illness in which patient self-management is critical to achieving the desired outcome.