People with type 1 diabetes (T1D) have a 3-4-fold higher risk of developing disordered eating behaviors than their peers without diabetes. What’s more is that eating disorders—such as dietary restriction, vomiting, or misusing insulin for weight control—increases the risk of severe diabetes complications, including DKA, earlier onset of diabetic kidney disease, and a 3-fold increase in premature death.
Existing treatments for eating disorders are less helpful for individuals with T1D. This is because these treatments are not tailored to the unique experiences of living with T1D, such as insulin therapy (which causes weight gain), careful dietary management, and diabetes-related distress.
Developing and evaluating interventions that prevent eating disorder symptoms and behaviors and eating disorder onset, as well as interventions that treat eating disorders in this high-risk population, is a key JDRF priority. This is an underfunded area of research where JDRF’s funding can have a substantial impact on a vulnerable population who currently doesn’t have efficient treatment options available.
In 2022 and 2023, JDRF funded three projects to address eating disorders in T1D, as well as funded a study—out now—which highlights the risks of T1D eating disorders and current barriers to effective and safe treatment. Let’s have a look.
JDRF Funding Recipients
Rhonda Merwin, Ph.D., Duke University
Dr. Merwin’s project aims to test the efficacy of an Acceptance and Commitment Therapy (ACT)—iACT, combining face-to-face sessions with interventions delivered by mobile app—for reducing eating disorder symptoms, improving glycemic management, and improving diabetes distress.
Previously, Dr. Merwin piloted a clinical trial of iACT in 23 participants with eating disorders and T1D. iACT was associated with large improvements in eating disorder behavior, diabetes management, and diabetes distress, and many individuals improved their HbA1c.
In the current JDRF-funded study, Dr. Merwin will test this intervention with a larger sample of individuals, namely 128 individuals between the ages of 16-45, who will be randomized to either iACT or control. The goal is to establish an effective treatment for eating disorders in T1D to reduce suffering and preserve longevity and quality-of-life.
Heather Stuckey, D.Ed., Penn State College of Medicine
Dr. Stuckey’s project aims to create a guide for healthcare professionals so they can know the warning signs of an eating disorder and know how to better communicate with that person to prevent problems.
First, she is going to interview 30 people who have T1D and a history of insulin restriction to identify the warning signs of a potential eating disorder. Second, she is asking healthcare professionals questions that relate to how comfortable they are in identifying someone who might be reducing or omitting insulin treatment and what education they would like to receive that would help them feel more confident.
The result will be a resource for diabetes professionals to use in helping to identify an eating disorder and an educational section on questions to ask in the event of a suspected condition.
Line Wisting, Ph.D., Oslo University Hospital
Dr. Wisting’s project aims to investigate the efficacy of a novel virtual eating disorder prevention program, termed Diabetes Body Project, in young women with T1D. In the preliminary clinical trial, they tested it on 35 young women, aged 16-35, and showed that it produced significant reductions in eating disorder symptoms and behaviors and diabetes distress.
Now, in the JDRF-funded clinical trial, they will recruit 240 adolescent and young women with T1D, in Oslo, Amsterdam, Boston, and San Francisco, and evaluate whether the intervention significantly reduces eating disorder behaviors, reduces diabetes distress and HbA1c, and reduces future eating disorder onset. If successful, it could be widely implemented to reduce T1D-related eating disorder behaviors and complications associated.
T1D Eating Disorders Report
With JDRF support, The Right Honorable Sir George Howarth MP and The Right Honorable Theresa May MP, who served as Prime Minister of the United Kingdom from 2016 to 2019, launched a parliamentary inquiry into eating disorders in T1D in June 2022. It gathered evidence from experts—those with direct lived experience, clinical leaders, researchers, and volunteer leaders.
George Howarth and Theresa May both have a T1D connection; Howarth had a daughter with T1D, who died unexpectedly from diabetes complications in 2011, and May has T1D herself.
The inquiry, out now, puts a spotlight on eating disorders in T1D and assesses the current T1D eating disorder services in the UK, with the aim of helping to prevent T1D eating disorders and support those living with these conditions.
Several barriers to effective care for people with T1D eating disorders were identified, including the lack of an internationally recognized diagnosis criteria and no clinically approved pathway to prevent and treat it. Ultimately, further research is needed to improve treatments at every stage of the condition.
In summary, developing and evaluating interventions that prevent eating disorder symptoms and behaviors and eating disorder onset in this ultra-high-risk population is a key public health priority.
Collaboration among the fields of diabetology and eating disorders will not only enhance clinical care but also foster ongoing research, including ways to modify diabetes care education in ways that may decrease the development of eating related disease in those with T1D.