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Is health-related quality of life as important as a patient’s A1c? Presentations at the 2016 ADA meeting discussed this component of diabetes care.
Conceptualizing and Measuring Quality of Life
“Quality of life has been a kind of estranged step-child in our work and one of the things I’m going to try to emphasize is the need to bring quality of life research back into the mainstream and make it as important, not necessarily more important, but as important as other outcomes, like behavior change or A1c,” stated Lawrence Fisher, PhD, Professor Emeritus, Department of Family and Community Medicine at the University of California, San Francisco. Dr. Fisher presented his findings at the American Diabetes Association’s Scientific Sessions.
Our primary goal as diabetes healthcare providers and clinical researchers is to help people live a long, healthy, and happy life. “Frankly I think we’re doing a really good job with the long and healthy. I don’t think we’re doing as good a job with the happy. We spend far too much time treating glucose numbers and not enough time treating people.”
A literature search of PubMed in the year 2015 with the keywords “quality of life” and “diabetes” references 1273 articles, said Dr. Fisher. While the construct of quality of life is being assessed, it’s not considered a primary outcome in its own right.
Dr. Fisher compared diabetes care to a three-legged stool. Diabetes treatment has been focused on numbers, which are important, or on behavior or behavior change. To balance the stool, a third leg – quality of life – is needed. “Health-related quality of life is its own thing. It’s another window into patient status and experience that is not addressed by either behavioral or biological measures.”
Quality of life can be a powerful predictor of outcomes independent of physiological and behavioral measures. Reductions in diabetes distress, a component of quality of life, have been significantly linked to reductions in A1c. Also, Dr. Fisher noted an interesting finding in cardiovascular literature. The presence of elevated depressive symptoms either immediately before or after a myocardial infarction is a better predictor of one-year mortality than biologic measures.
Dr. Fisher stressed that quality of life assessment cannot just be “pulled off the shelf;” it requires careful strategy of assessment and needs to engage patients and caregivers in order to be comprehensive and relevant.
Developing a Diabetes Health-Related Quality of LIfe Measurement
Marisa E. Hilliard, PhD, Assistant Professor of Pediatrics, Baylor College of Medicine, Texas Children’s Hospital, presented the mixed-methods study she and her group have been performing in order to develop a new patient-reported outcome measure of diabetes-related quality of life. Her study focuses on patients with type 1 diabetes.
One of the gaps in measuring diabetes health-related quality of life Dr. Hilliard and her group found was a developmentally tailored measurement. “When you have [type 1] diabetes, you have it for life, and your life changes from when you’re 8 to 18 to 28 to 48 and so on. And your quality of life may also change. We need to be able to assess quality of life in ways that are appropriate and consistent with where you are developmentally in your life. That means the kinds of questions we ask and the way we ask them.”
There are also gaps in measuring health-related quality of life for caregivers and families of patients with diabetes and in understanding patterns and trajectories of health-related quality of life over life stages and for different profiles of patients (age at diagnosis, duration of diabetes).
The goal of Dr. Hilliard’s study was to develop a suite of diabetes health-related quality of life measures for people with type 1 diabetes across the lifespan. The study included seven age-bands: <8, 8-11, 12-17, 18-25, 26-45, 46-60, and >60. Based on the patient’s age, measurements were reported by the patient’s parent, the patient, the partner, and/or the caregiver.
To develop this questionnaire, Dr. Hilliard’s group first conducted interviews with 81 people with diabetes (37 pediatric and 44 adult age ranges), as well as five diabetes care providers. These interviews were used to identify core themes and develop a draft of the questionnaire. Then, the group piloted the survey items with 41 people with diabetes and family members (21 pediatric and 20 adult age ranges).
After a review and refinement, the group is now prepared to launch the psychometric validation of the test and begin collecting data at six type 1 diabetes exchange sites (3 pediatric and 3 adult) across the US beginning June 13, 2016. The sites were selected to provide demographic and geographic diversity. They plan to enroll 3600 people in the study.
Dr. Hilliard listed several planned uses of the collected data. The first is as clinical interventions to help guide clinical care and to determine how often these assessments should take place. They would also like to see the questionnaires used for research as standard patient-reported outcomes in clinical trials occurring across the lifespan and for directing quality of life improvement. Finally, the group plans to revisit these measures every five years to make sure content is still valid and to adapt and update the content as needed.