NEW ORLEANS – Quality of life measures are sorely lacking for patients with type 1 diabetes, but researchers are attempting to identify measures of patient well-being that go beyond the hemoglobin A1c (HbA1c) level.
At a symposium at the annual scientific sessions of the American Diabetes Association, moderator Kimberly A. Driscoll, PhD, of the University of Colorado, said that “measuring quality of life [should become] a standard part of the routine diabetes clinic visit, just like taking blood pressure.” Parents, partners, and caregivers also need to be involved in deciding what quality of life measures matter, as they are the patients’ sources of support.
Dr. Marisa E. Hilliard
Marisa E. Hilliard, PhD, reported on her research team’s efforts to glean from questionnaires the measures that would matter to those with type 1 diabetes and their caregivers. The goal is to create a tool to measure diabetes-related quality of life.
“We want to be able to track quality of life over time and understand how it’s different for different people, and there is not great research on that data,” said Dr. Hilliard of Baylor College of Medicine/Texas Children’s Hospital, Houston.
Lawrence Fisher, PhD, concurred that a quality of life research gap exists for those with type 1 diabetes. A PubMed search indicates that 1,273 papers were published in 2015 with the key words “diabetes” and “quality of life,” yet few of these papers had designated quality of life as a primary outcome. In type 1 diabetes, quality of life “is comprised of one gigantic bucket into which we have thrown all kinds of things, and it’s mired by dozens of different kinds of measures that are all called ‘quality of life’ but define and measure it in very different ways,” said Dr. Fisher of the Behavioral Diabetes Research Group at the University of California, San Francisco.
Patient management in diabetes is a three-legged stool comprised of equal components of glycemic control, behavioral change, and quality of life. Patients are living longer and have healthier lives, but “I don’t think we’re doing as good a job with the happy” aspect of patients’ lives, he said “We spend far too much time treating glucose numbers and not enough time treating people.”
Without measuring quality of life, “you never evaluate the actual cost to individuals of achieving a gain in improved HbA1c or improved behavioral change.”
Dr. Lawrence Fisher
“I’m told that today, at this point, there are between 15 and 20 diabetes-specific quality of life scales,” he said. “It’s a real hodgepodge. … and one shouldn’t “just go in and pull the measure off the shelf because it has ‘quality of life’ in the title.” The measure must also take into account factors such as patient age, gender, and ethnicity.
Dr. Hilliard and her team are trying to address the “major lack of developmentally tailored measurement instruments. When you have diabetes, you have it for life, and the issues relevant to your quality of life change from age 8 to 18 to 40 and so on.”
Based on interviews with 81 people with type 1 diabetes and their caregivers, the research team developed 14 different measures specifically designed for seven different age bands of people with diabetes – from age 8 years and younger through age 60 years and older. Each age band, with the exception of age 8 years and younger, involves self-reporting by the patient and either the parent, partner, or caregiver. Only the parent self-reports in the youngest age band.
To validate the measures, the researchers plan to enroll 3,600 participants at six sites from the Type 1 Diabetes Exchange and hope to have results in about 18 months. “Our goal is to get the questionnaire to less than 30 items so it takes less than 5 minutes to complete, and to develop a scoring system,” Dr. Hilliard said.
Besides patient care, the measures could be used for clinical trials across the lifespan of people with type 1 diabetes and quality improvement initiatives, she said. Once established, an expert committee would review the measures every 5 years and update them as needed.
Dr. Fisher disclosed he is a consultant to Abbott, Eli Lilly and Company, and Roche Diagnostics.
Dr. Hilliard had no financial disclosures. The Leona M. and Harry B. Helmsley Charitable Trust and the National Institutes of Diabetes and Digestive and Kidney Disease have provided funding for her study.