Quality of Life: Beyond the A1C

Today I want to introduce you to Caroline, a MiniMed Ambassador and Instagram-fanatic, who recently served as one of our social media correspondents at the American Diabetes Association’s 76th Scientific Sessions in New Orleans. Joined by the Medtronic team and healthcare professionals from around the world, Caroline attended countless sessions on diabetes care throughout the weekend. One of the interesting focus areas discussed this year was “quality of life” and how it relates to diabetes. Here’s what she found out about this hot topic.  

Diabetes is a demanding disease. As I’m approaching my 10th year with diabetes I’ve experienced many hardships mostly because once every 15 minutes, I have to deal with my diabetes. I have to stop what I’m doing, think about how I’m feeling, try to remember when and what I last ate, think about what I’ll be doing next, and decide whether to test my blood. Then, depending on the results of the test (or my guess as to my sugar level), I’ll plan when to eat or take my next insulin bolus. Can anything so omnipresent as diabetes and its management not affect a person’s quality of life, a person’s ability to function and to derive fulfillment from doing so?

What is quality of life? It seems clear that diabetes can affect a person’s quality of life. But what is quality of life? In the most general terms, quality of life may be thought of as a multidimensional construct incorporating an individual’s subjective perception of physical, emotional, and social well-being, including both a cognitive component (satisfaction) and an emotional component (happiness.)

Quality of liCarolinefe is increasingly recognized as an important health outcome in its own right, representing the ultimate goal of all health interventions. More than 50 years ago, the World Health Organization stated that health was defined not only by the absence of disease and infirmity, but also by the presence of physical, mental, and social well-being.

Health-related quality of life and diabetes-specific quality of life represent increasingly narrower concepts. A major component of Health- Related Quality of Life (HRQOL) is the idea that we, as a society, are moving to this idea that we are now treating people, not numbers.

Diabetes treatment and care often focuses on measurable goals, such as maintaining target blood glucose levels. Health- related quality of life can be seen as a newfound focus in diabetes research, treatment and care, according to experts at the Symposium, “Beyond A1C—Why Quality of Life Matters,” presented on June 11, 2016, during the American Diabetes Association’s Scientific Sessions in New Orleans.

Why is quality of life important in diabetes? First, many people tell me that when they suffer from diabetes burnout (i.e., poor quality of life), they often take a “What can I really do?” attitude toward their self-care, doing less than they should to manage their diabetes. Diabetes burnout can lead to diminished self-care, which in turn leads to deteriorated glycemic control, increased risks for complications, and exacerbation of diabetes burnout in both the short run and the long run. Thus, quality-of-life issues are crucially important, because they may powerfully predict an individual’s capacity to manage his/her disease and maintain long-term health and well-being. These issues are especially critical for children and adolescents, who will probably spend many years living with diabetes and thus need skills instilled early.

Questionnaires can also be extremely useful in measuring quality of life for people with type one diabetes. Marisa E. Hilliard, PhD, Assistant Professor of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, in her presentation, “Developing a Measure of Diabetes Health-related Quality of Life Across the Lifespan—Preliminary Qualitative Findings” discussed how she and her team are currently conducting a mixed-methods study—interviewing people with type 1 diabetes and their caregivers (parents and partners) in order to better comprehend the quality of life issues they experience at different points in life.

“People with diabetes are more than their glycemic control data,” she said. “The day-to-day experiences of living with and managing type 1 diabetes need to be better understood and addressed in clinical research and practice. Developed from the personal stories of people with diabetes and their family members, we hope the new patient-reported outcome measures we are developing will advance our ability to prioritize quality of life in clinical research and care. It is equally as important as glycemic control to the overall health and well-being of people with diabetes and their families.”

The future of quality of life and diabetes in research and care. I believe quality-of-life research in diabetes will begin to realize its potential when we can design, implement, and evaluate interventions that impact factors that affect quality of life. Among these factors, coping skills may be the critical one. It appears that active and effective disease-specific coping can trigger a positive cascade of enhanced well-being, more active diabetes self-management, better glycemic control, and fewer complications.

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  1. Avatar Patty Jones

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