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DIABETES: Measures of Quality of Care Should Include Patient-Centered Outcomes
Description of issue
Diabetes mellitus is a major medical, personal and public health problem. In 2006, the American Diabetes Association (ADA) estimated that 20.8 million people in the United States had diabetes. Among these, 14.6 million people have been diagnosed and 6.2 million people are unaware they have the condition. Another 41 million have "pre-diabetes" (American Diabetes Association, 2006). The proportion of the population with diabetes increases with age, and racial and ethnic groups including Native Americans, African-Americans, Hispanics, and Pacific Islanders are at increased risk (see Figure).

Source: For American Indians/Alaska Natives, the estimate of total prevalence was calculated using the estimate of diagnosed diabetes from the 2003 outpatient database of the Indian Health Service and the estimate of undiagnosed diabetes from the 1999-2002 National Health and Nutrition Examination Survey. For the other groups, 1999-2002 NHANES estimates of total prevalence (both diagnosed and undiagnosed) were projected to year 2005.
Poor diabetes control over a long period of time is a major health concern because it is associated with breakdowns in nearly every system within the body. Some of the major complications are heart disease, kidney disorders, blindness, amputations of the feet and toes, and mortality and morbidity associated with child birth. Not surprisingly, diabetes is also associated with reduced quality of life (Kaplan et al., 1990; Kaplan et al., 1998).
Fortunately, there have been improvements in the quality of care that can be provided to persons with diabetes (Fisher et al., 2005), and which should lead to reductions in diabetes-related complications, mortality, and societal costs. An important part of this quality improvement has been the establishment of widely used performance measures, which specify the care that should be provided to all persons with diabetes. (Institute of Medicine et al., 2001; Wagner, 1998). However, patient-centered measures (discussed below) are not currently included in diabetes performance criteria. Since in quality improvement, "what gets measured, gets done", it is important to include these measures as a critical component of diabetes care.
Findings
Assessments of quality of care typically emphasize provider behavior. For example, performance measures for diabetes care currently include the glycosylated hemoglobin test and diabetic foot and eye exams. While providers can conduct the necessary tests to monitor the patient, quality diabetes care must also recognize and reflect a patient centered approach, defined by the Institute of Medicine as "respectful of and responsive to individual patient preferences, needs, and values, and ensure that patient values guide all clinical decisions" (Heisler et al., 2002; Institute of Medicine et al., 2001). Patient-centered approaches customize care to the specific needs and circumstances of each individual, which is especially critical in addressing sociocultural and behavior change aspects of care, and may influence health disparities. One of the keystones of patient-centered care, and of programs that have improved diabetes care, has been the creation of specific goals for self-management behaviors, that are collaboratively set between the patient and the health care team (Institute of Medicine et al., 2001; Wagner et al, 1998). Additionally, it is important that patient centered care and promotion of self management include teaching problem solving skills and other specific skills to achieve patients' goals and provide ongoing monitoring, support and trouble-shooting of goal attainment (Fisher et al., 2005).
Methods
Practical measures of patient-centered care and diabetes self-management are already available. These measures are brief and have been validated (Glasgow et al., 2005a): Mulcahy et al., 2003). The rationale for key research on and examples of successful widespread use of measures in each of four key areas which describe quality patient-centered diabetes care are briefly summarized below:
- Health Behaviors: There is consensus on the importance of health behaviors recommended for diabetes, such as physical activity, healthy eating, medication taking, and not smoking (Mulcahy, et al., 2003). Brief measures of these behaviors are available. For example, the CDC annually assesses these health behaviors as part of the Behavioral Risk Factors Surveillance Survey. The Association of Diabetes Educators has developed succinct assessments of key diabetes self-management behaviors known as the AADE7 (Mulcahy et al, 2003).
- Quality of Life: There is increased recognition that quality of life is the ultimate bottom line of healthcare. Two measures-one diabetes specific and one general quality of life, have been widely employed across Europe as part of the Diabetes, Attitudes, Wishes, and Needs (DAWN) program (Rubin et al., 2006)-a multi-national effort to promote patient-centered diabetes care. The Problem Areas in Diabetes/Diabetes Distress Scale as used in DAWN provides valuable, actionable feedback to both clinicians and patients as to problematic areas; and a general utility assessment allows comparison of diabetes care to other healthcare interventions (Kaplan, 1998).
- Self-management goals: The simple inclusion of patient self-management goal(s) as part of medical records is a key essential task to facilitate diabetes care prioritization and coordination. This has been done successfully with either electronic or paper medical records, and in a variety of settings including community health centers having few resources (Chin et al., 2004).
- Patient-centered care: Truly patient-centered care is unlikely to come about until it is assessed at regular intervals and clinicians and healthcare organizations are held accountable for providing it. Today, there are several validated measures of high-quality, patient-centered care compatible with the Chronic Care Model (Glasgow et al., 2005b) and with patient-centered primary care more generally (Safran, 2000; (Williams et al., 1998b).
Policy Recommendations
Regular collection of measures of patient-centered care and behavior change for patients with diabetes would be an important step toward improving diabetes self-management and quality of care nationwide. Measures of patient behaviors and patient reported outcomes should become part of routine diabetes care. Even though self-management is acknowledged as a central component of diabetes care, current quality standards and outcome measures often neglect the patient's perspective.
The Centers for Medicare and Medicaid Services (CMS) and organizations charged with enhancing quality of diabetes care such as the National Committee for Quality Assurance (NCQA) and state-level quality improvement organizations are in a position to encourage changes in practice policy to routinely include the above measures in their quality assessments. In addition, medical care offices and organizations should also routinely collect measures of behavior change and patient-centered care.
Under the leadership of CMS, NCQA and other organizations, SBM recommends that the following areas be assessed as a standard part of diabetes performance and quality measurement:
- Health behaviors including physical activity, dietary intake, medication taking, and smoking status. Recommended sources for measures of these key health behaviors include CDC BRFFS 2005; Glasgow, Ory, et al 2005a; Mulcahy et al, 2003; and Toobert et al, 2000;
- Diabetes specific and generic quality of life. Recommended sources for measures include Rubin et al, 2006; Polonsky, Fisher et al, 2005; Kaplan 1998;
- Patient self-management goals. Recommended sources for measures include Chin et al, 2004; Glasgow et al, 2002; and
- Patient-centered diabetes care. Recommended sources for measures include Glasgow et al, 2005b; Safran et al 2000; Williams, 1998, 1998a.
REFERENCES
Adams, K. & Corrigan, J. M. (2003). Priority areas for national action. Transforming health care quality Washington, D.C.: Institute of Medicine.
American Diabetes Association (2006). diabetes 4-1-1: Factors, figures, and statistics at a glance. Atlanta, GA: American Diabetes Association.
Chin, M. H., Cook, S., Drum, M. L., Jin, L., Guillen, M., Humikowski, C. A. et al. (2004). Improving diabetes care in Midwest community health centers with the Health Disparities Collaborative. Diabetes Care, 27, 2-8.
Fisher, E. B., Brownson, C. A., O'Toole, M. L., Shetty, G., Anwuri, V. V., & Glasgow, R. E. (2005). Ecological approaches to self-management: The case of diabetes. American Journal of Public Health, 95, 1523-1535.
Glasgow, R. E., Funnell, M. M., Bonomi, A. E., Davis, C., Beckham, V., & Wagner, E. H. (2002). Self-management aspects of the improving chronic illness care Breakthrough Series: Implementation with diabetes and heart failure teams. Annals of Behavioral Medicine, 24, 80-87.
Glasgow, R. E., Ory, M. G., Klesges, L. M., Cifuentes, M., Fernald, D. H., & Green, L. A. (2005a). Practical and relevant measures of health behavior for primary care settings. Annals of Family Medicine, 3, 73-81.
Glasgow, R. E., Whitesides, H., Nelson, C. C., & King, D. K. (2005b). Use of the Patient Assessment of Chronic Illness Care (PACIC) with diabetes patients: Relationship to patient characteristics, receipt of care, and self-management. Diabetes Care, 28, 2655-2661.
Heisler, M., Bouknight, R. B., Hayward, R. A., Smith, D. M., & Kerr, E. A. (2002). The relative importance of physician communication, participatory decision making and patient understanding of diabetes self-management. Journal of General Internal Medicine, 17, 243-252.
Institute of Medicine & Committee on Quality of Health Care in America (2001). Crossing the quality chasm: A new health system for the 21st Century. Washington, DC: National Academy Press.
Kaplan, R. M. & Ganiats, T. G. (1990). Qalys: Their ethical implications. Journal of the American Medical Association, 264, 2502-2503.
Kaplan, R. M., Ganiats, T. G., Sieber, W. J., & Anderson, J. P. (1998). The Quality of Well-Being Scale: Critical similarities and differences with SF-36 (see comments). International Journal of Quality of Health Care, 10, 509-520.
Mulcahy, K. Maryniuk, M., et al. (2003). Diabetes self-management education outcome measures. Diabetes Educator, 769 ff.
Polonsky, W. H., Fisher, L., Darles, J., Dudl, R. J., Lees, J., Mullan, J. et al. (2005). Assessing psychosocial distress in diabetes: Development of the diabetes distress scale. Diabetes Care, 28, 626-631.
Rubin, R. R., Peyrot, M., & Siminerio, L. M. (2006). Health care and patient-reported outcomes: Results of the cross-national Diabetes Attitudes, Wishes and Needs (DAWN) study. Diabetes Care, 29, 1249-1255.
Safran, D. G., Murray, A. M., Chang, H., Montgomery, J., Murphy, J., & Rogers, W. H. (2000). Linking doctor-patient relationship quality to outcomes. Journal of General Internal Medicine, 15, 116.
Toobert, D.J., Hampson, S.E., & Glasgow, R.E. (2000). The summary of diabetes self-care activities scale: Results from seven studies and revised scale. Diabetes Care, 23, 943-950.
Wagner, E. H. (1998). Chronic disease management: What will it take to improve care for chronic illness. Effective Clinical Practice, 1, 1-4.
Williams, G. C., Freedman, Z. R., & Deci, E. L. (1998a). Supporting autonomy to motivate patients with diabetes for glucose control. Diabetes Care, 21, 1644-1651.
Williams, G. C., Rodin, G. C., & et al (1998b). Autonomous regulation and long-term medication adherence in adult outpatients. Health Psychology, 17, 269-276.
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