Breakthrough T1D’s Improving Lives Program aims to ensure that people with type 1 diabetes (T1D) have the best quality of life possible until we realize cures. Daily T1D management is burdensome and demanding, and it can take a toll on mental and emotional health. That’s why providing psychosocial support to the T1D community is a key component to our Improving Lives work.
Experts convene at Breakthrough T1D’s Psychosocial Roundtable
To better understand the mental health needs of the T1D community, Breakthrough T1D and our partner, The Leona M. and Harry B. Helmsley Charitable Trust, co-hosted a Psychosocial Roundtable earlier this year, convening mental and behavioral health experts across the T1D care spectrum.
The goal was to understand how Breakthrough T1D can improve its efforts in the psychosocial space to provide the best possible resources so more people with T1D do better. Read on to learn about the current state of mental health care for the T1D community, what Breakthrough T1D is doing to help support the mental and emotional wellbeing of people with T1D, and the challenges we still face.
Mental wellbeing challenges for people with T1D
Diabetes distress, depression, anxiety, and disordered eating are the primary psychosocial conditions that people with T1D may experience. They can arise from the stress of day-to-day T1D management (such as insulin dosing and fear of hypoglycemia), a new T1D diagnosis, or long-term complications.
According to the American Diabetes Association, one in four people with T1D will likely experience high levels of diabetes distress, which itself can lead to worse blood sugar control. It is often associated with anxiety and, if left untreated, can develop into major depression. Diabetes distress more often impacts adolescents and young adults with T1D.
People with T1D may also develop eating disorders, often manifesting as anorexia, bulimia, or purposeful misuse of insulin to lose weight (diabulimia). These issues are more likely to occur in women or girls.
Addressing mental and emotional health needs for the T1D community
In recent years, there has been a surge in research addressing diabetes distress. In addition, Breakthrough T1D spearheaded an effort to support the publication of clinical guidelines for autoantibody-positive stage 1 or 2 T1D, which has an entire section dedicated to guidance for healthcare professionals (HCPs), families, and caregivers to provide psychosocial support.
Psychosocial interventions are structured programs led by trained professionals that can help alleviate mental and emotional distress. For example, a Breakthrough T1D-funded study is examining the use of cognitive behavioral therapy to address anxiety in presymptomatic T1D. This type of intervention may help ease fears caused by impending onset of T1D symptoms—and may even be applicable to people who might be too nervous to get screened.
The most successful models for mental health care in practice have been group-based, fully virtual, limited in time, and focused on emotions. To further elevate mental health interventions for the T1D population, Breakthrough T1D has developed a multi-pronged strategy to ensure that people with T1D can get the support they need:
- Increase the number of trained psychosocial professionals.
- Increase the number of available psychosocial interventions.
- Improve implementation of psychosocial interventions into clinical practice.
Despite the availability and success of interventions that help manage mental health and T1D, there are still gaps in care that we need to work hard to overcome.
Existing challenges in mental health care for people with T1D
One of the most pressing barriers to incorporating psychosocial interventions into clinical practice is a lack of HCPs who are trained to provide mental health care to people with T1D. Many clinical settings don’t have the resources to support an additional behavioral health expert specifically for T1D, so T1D training programs must include an understanding of how to provide mental health support as part of comprehensive care.
Along these lines, many HCPs and families may not know that mental health support programs exist for people with T1D. Or, if they do, there may be logistical challenges for participants, such as time constraints or meeting location.
The T1D research community needs more scientific, data-driven research for psychosocial interventions. For example, there has been little research to date on disordered eating and T1D. An inquiry spearheaded by Breakthrough T1D affiliates in the U.K. determined that there is a significant gap in education, clinical guidelines, and recognized criteria for T1D-associated eating disorder diagnoses. Similarly, because diabetes distress is not considered a mental health disorder, there are no clinical criteria associated with it—making diagnosis and treatment even more difficult.
Because of these challenges, the rates of screening and use of evidence-based mental health support programs for people with T1D varies significantly between clinics. Even more, there is the persistent issue of mental health care reimbursement—if it’s not covered by insurance, people with T1D may choose to not utilize the programs available to them.
How Breakthrough T1D is filling these gaps
Thanks to the experts who convened at the Psychosocial Roundtable, Breakthrough T1D has a path forward for tackling these pressing issues. We need to do more for the mental and emotional wellbeing of the T1D community—and we’re working hard to increase research into and awareness of psychosocial support programs that may improve the quality of life of people with T1D.
One way Breakthrough T1D is working to improve mental health care is through our recently launched Medical Affairs Program, which is addressing gaps between access to interventions and adoption by HCPs—a major effort that includes HCP education. It will be critical to integrate psychosocial care into clinician training and routine T1D visits.
Breakthrough T1D is also working to encourage innovative, interventional research and investing in promising studies—especially in less-studied areas, like T1D eating disorders. The next step is making sure that these studies can be incorporated into clinical practice by HCPs so they can be accessed by the people who need them most. We understand that psychosocial support needs to expand across the entire T1D population—including adults, people who are pregnant or recently diagnosed, and underserved communities—in order to have the greatest impact.
So, what can you do? Keep an eye out for psychosocial clinical trials that you or someone you know may be eligible to participate in. Refer to Breakthrough T1D’s mental health guide for additional support and guidance.
