Demystifying "Patient-Centered" Care in Type 2 Diabetes: The Role of Systematic Measurement

Evidence-Based Diabetes Management, March 2016, Volume 22, Issue SP4

Questionnaires are noninvasive, inexpensive measures that can identify key elements of the patient perspec­tive that are important for the achievement of better outcomes in diabetes care.


Questionnaires are noninvasive, inexpensive measures that can identify key elements of the patient perspec­tive that are important for the achievement of better outcomes in diabetes care.


Over the last several decades, tremendous advancements have been made in understanding the microvascular and macrovascular pathophysiology of type 2 diabetes (T2D) and in understanding the roles of a healthy diet, physical activ­ity, and pharmacotherapies in reducing morbidity and mor­tality associated with uncontrolled plasma glucose levels.1 Major public health initiatives have been implemented to support the prevention and management of T2D, and recent guidelines from the American Diabetes Association (ADA), the American Association of Diabetes Educators, and the Acad­emy of Nutrition and Dietetics outline diabetes self-manage­ment education and support strategies that healthcare pro­viders and accountable care organizations (ACOs) can use to promote self-care behaviors.2

These self-care behaviors include healthy eating, physical activity, daily monitoring activities, medication adherence, problem-solving skills, risk reduction strategies, and healthy coping strategies.2 These guidelines, along with the joint ADA/ European Association for the Study of Diabetes position state­ment on the treatment of T2D emphasize the importance of considering individual patient perspectives (eg, health and cultural beliefs, health literacy, physical limitations, family support, emotional health, and financial status) when col­laborating on disease management strategies.2,3 Significant emphasis is placed on the role of patient behaviors in deter­mining outcomes associated with T2D.2,3

Payers and healthcare consumers are also contributing tre­mendous financial resources toward T2D management: be­tween 2002 and 2011, the annual direct medical costs of dia­betes were estimated to exceed $218 billion.4 On an individual level, average lifetime medical costs have been estimated to be more than $85,000 per patient with T2D.5

Despite recent advances in drug therapies, initiatives to im­prove self-care, and the enormous financial investments in managing T2D, disease outcomes are still far from ideal. Cur­rent approaches that encourage individuals to follow behavior recommendations are simply not working: between 1998 and 2006, significant declines in adherence to healthy behaviors were observed among US adults, including those with diabe­tes.6 In addition, analyses of diabetes medication adherence, based on measures such as medication possession ratio (MPR; proportion of doses taken to doses prescribed), found that compliance with treatment is poor.7 Consequently, a recent analysis of data from the National Health and Nutrition Ex­amination Survey and the Behavioral Risk Factor Surveillance System indicated that fewer than 50% of individuals with dia­betes are meeting their recommended glycemic goals.1

Provision of high-quality care requires achieving the triple aim of improving the individual experience of care, improving the health of populations, and reducing the per capita cost of care. Meeting these goals will require addressing defects in healthcare quality and reducing wasteful spending on ser­vices of limited value.8 Diabetes care, in particular, presents unique challenges to meeting these goals because high-qual­ity healthcare for chronic diseases is costly, given that effec­tive disease management may require regular appointments with primary care practitioners, as well as diabetes educators and a range of specialists (eg, nutritionists and ophthalmolo­gists).9 This “performance paradox” in T2D makes it extremely difficult to achieve all of the triple aims at once. For example, data indicate that ACOs reporting the greatest cost savings are simultaneously receiving lower scores for quality of diabetes care, while ACOs with the highest quality scores show only modest cost savings.9 These findings highlight challenges in the design of programs such as the Healthcare Effectiveness Data and Information Set (HEDIS), the Physician Quality Re­porting System (PQRS), and the Medicare 5-star rating pro­gram, which all require implementation of quality measures that reduce costs, manage side effects, and support a positive patient experience.

T2D is a chronic disease that requires persistent attention to disease management by individuals. If steps can be taken to help patients become actively engaged in managing the ev­eryday challenges of their disease, they could be in a position to substantially improve their healthcare quality and reduce costs.10 Thus, it is exceedingly important to empower patients in their role as self-managers of their disease. This empow­erment requires measurement of concepts including patient knowledge, skill, belief, confidence, satisfaction, support, and health-related quality of life so that education and support efforts can be tailored to the unique needs of each individual. Starting with appropriate goals that fit each patient’s level of knowledge, skill, and engagement, and working toward in­creasing activation over time, patients can experience small successes and steadily build up the confidence and ability they need to effectively self-manage their disease.11,12

In contrast to some other chronic diseases, people often do not experience burdensome symptoms of T2D on a daily ba­sis. The absence of symptoms may limit motivation to adhere to medication and self-care behaviors. In addition, although patients often understand that uncontrolled chronic hyper­glycemia can have serious long-term health consequences, the nearer-term burdens of keeping up with diet and exercise regimens and tolerating the potential side effects of antihy­perglycemic medications may take precedence. Making last­ing lifestyle changes is difficult, and evidence suggests that an investment in ongoing professional support would be re­quired to impact outcomes at a population level.13 In addition, side effects such as edema, nausea, hypoglycemia, and weight gain, can be disincentives to not only medication adherence, but also performance of healthy behaviors.14

In contrast, if individuals feel satisfied with their health, research indicates that they will be more likely to initiate or continue healthy behaviors and experience better long-term outcomes.15-17 Healthy behaviors can lead to a positive cycle of continuous benefits and reinforcement.18 Belief in the impor­tance of—as well as confidence in—performing healthy be­haviors are necessary components of self-care.18 Using well-formulated questionnaires to assess concepts such as health satisfaction, belief, and confidence, as well as changes in be­havior, is a viable, concrete, and cost-effective way to facilitate the practice of patient-centered care.18

There are several well-established questionnaires avail­able to measure and track the concepts related to self-care and adherence. Data from these questionnaires can increase healthcare worker awareness of potential barriers to effec­tive long-term disease management and allow providers to address these issues before unfavorable outcomes occur. Patient-provider discussions of questionnaire responses can provide a forum for increased patient engagement and clini­cal practice improvement. Collecting these data in electronic form and incorporating them into the medical record would be valuable, allowing for insights into the patient experience over time. Conversing about these types of data will aid in op­erationalizing the central role of the patient in collaborative disease management efforts.


Shana B. Traina, PhD, is a full-time employee of Janssen Global Services, LLC. April Slee, MS, is a full-time employee of Axio Research, which has provided consulting services for Jans­sen Global Services. Editorial support was provided by Cherie Koch, PhD, of MedErgy, and was funded by Janssen Global Ser­vices, LLC.


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