Expert Q&A: Measuring the financial burden of managing diabetes and its impact on patients

A new study led by Minal Patel, associate professor of Health Behavior and Health Education at the University of Michigan School of Public Health, looks at the financial costs that people with diabetes face and how it impacts their ability to manage their condition.

We talked to Patel about the study and its implications for further research on the financial burden of diabetes.

How does the cost of managing diabetes impact individuals with the condition?

For many people, the multiple services and supplies required to manage diabetes and its comorbidities result in significant financial burdens, emotional distress, and unmet basic needs. Half of US adults with diabetes report financial stress and nearly a quarter experience high out-of-pocket healthcare costs and food insecurity. On average, people with diabetes have medical expenditures about twice as high as similar individuals without diabetes.

Additionally, individuals with diabetes report alarming rates of cost-related non-adherence (CRN), with rates ranging from 20–40%. In other words, the high cost of medication causes these individuals to either adjust the amount or frequency of their medication in a way that does not comply with their physician’s recommendations or to forgo needed medication to manage their diabetes. CRN among people with diabetes is associated with high A1c levels, more symptoms, and declines in functioning. Over time, patients with cardiovascular disease, including diabetes, who use less of their medication than prescribed due to cost concerns are more likely to be hospitalized.

How have previous studies measured the financial burden of diabetes management, and how is this study different?
Our understanding of financial burden and stress associated with diabetes management is primarily derived from national studies that use single-item measures that capture or serve as proxies for financial stress, out-of-pocket expenditures, and behavioral responses to cost pressures. This study measured a more comprehensive construct called financial toxicity through a multi-item measure called the COST-FACIT that has been validated in studies among people with cancer.

How do you define financial toxicity?
Financial toxicity describes the material conditions that arise from greater expenses and lower income, the psychosocial response to those material conditions, and the coping behaviors that patients and their families adopt to manage their care, their condition and their financial situation. 

In this study, you measured the reliability of COST-FACIT for adults with diabetes and high A1c. What is COST-FACIT
COST-FACIT (which stands for the COmprehensive Score for financial Toxicity-Functional Assessment of Chronic Illness Therapy) is a proven tool for measuring financial distress among people with cancer. The COST-FACIT measure consists of 11 statements that measure financial toxicity, with respondents rating each statement on a 5-point scale.

How did you go about testing the validity of COST-FACIT for people with diabetes?
We used baseline data from one of our ongoing randomized controlled trials. This was 600 people with high A1c who had completed the COST-FACIT instrument, and also provided us with rich data about their demographic and clinical characteristics, their financial management practices, and their emotional well-being.

How did COST-FACIT scores correlate with individuals’ health outcomes?
Having lower COST-FACIT scores (or worse financial distress) was associated with several significant diabetes outcomes including higher levels of diabetes distress and more depressive symptoms. Those with less financial distress engaged in more self-care.

While all participants in our study had A1c levels of at least 7.5%, lower COST-FACIT scores were associated with higher A1c levels.

Anything else we should know?
Our findings provide strong evidence supporting financial toxicity as a relevant and clinically significant concept among people with diabetes, and the COST-FACIT as a promising patient-reported outcome measure to assess patient perception of their general financial situation and the impact of treatment on their economic well being.

Although our sample was heterogeneous in terms of race/ethnicity, further work is warranted to assess the COST-FACIT across people with diabetes and varying levels of glycemic control and reported unmet social needs. Further, with a random, heterogeneous sample of people with diabetes, a next step to this research would be to establish a clinically meaningful grading system and differentiating among levels of financial toxicity. It also would be important to further test briefer versions of the COST-FACIT scale for screening and intervention in clinical practice.

Study co-authors include University of Michigan researchers Guanghao Zhang, Michele Heiseler, Peter Song, John Piette, Xu Shi, Hae Mi Choe, Alyssa Smith, and Kenneth Resnicow.