JDRF recently brought together a group of 20 leading experts in the behavioral and mental health fields to discuss the range of psychological and social issues experienced by people with type 1 diabetes (T1D) and their families.  Forums like this enable JDRF to stay up-to-date with the full spectrum of issues faced by people with T1D so we can better represent their needs in everything we do and improve JDRF-developed materials and resources and practical information about living with T1D.  JDRF is indebted to Chip Halverson, JDRF board of chancellors’ member and parent of a daughter with T1D, who championed this effort and provided the financial support for the event. JDRF board member Nicole Johnson who has T1D and is an international diabetes consultant, advocate, and researcher of the psychosocial aspects of diabetes provided valuable guidance during the organization of the meeting. Both Chip and Nicole participated in the meeting sharing their personal insights with the other attendees.

It’s not news to anyone with T1D or with a family member who has T1D that this disease presents a number of unique challenges unlike those seen with other chronic diseases. Many of the unique challenges of T1D result in important outcomes that go beyond blood glucose control – they extend to a variety of psychosocial and quality-of-life issues affecting individuals and their families.  Some of the factors that make T1D management unique among chronic diseases include: an intensive 24/7 regimen of blood-glucose management, the often non-private nature of testing and injections and using devices, the required attention to meal planning, food-related issues, and body weight, and the imprecise connection between blood-glucose management actions and the desired level of control. Because of these unique challenges, studies have shown that among chronic diseases, T1D has one of the lowest rates of individuals complying with their disease management plans. One study reported that 88% of HIV patients stay on their disease management plan – a high among chronic diseases – and that T1D patients were among the lowest at only 67% staying on plan.

The experts discussed how the unique aspects of T1D management result in a number of well-documented psychosocial burdens and quality-of-life issues. These issues affect everyone living with the disease, especially children with T1D and their parents, and adolescents and young adults. Reports of psychosocial issues range from mild symptoms to diagnosed psychiatric disorders. These may include; stress and distress, feelings of helplessness, anger, exhaustion, or embarrassment, disruptive behaviors, family conflict, eating disorders, substance abuse, anxiety, and depression. Milder symptoms are not as well-documented, but healthcare providers reported in a survey that 10-30% of children and adolescents with T1D experienced mild psychosocial symptoms.  Multiple studies provide documentation of psychiatric disorders in people with T1D. Of particular concern, one study found that two-thirds of adolescents with poor T1D management also experienced psychosocial issues, providing evidence of the critical negative impact these issues can have on an individual’s management of the disease.

Numerous insights were shared about the reasons why psychosocial, mental health, and quality-of-life issues often receive limited attention during the routine care visits of people with T1D.  The most fundamental reason noted was the limited coverage for behavioral and mental health care in the United States. Interventions to address the psychosocial burdens experienced by people with T1D add time to a healthcare provider visit and require resources that are not routinely reimbursed without a clinical diagnosis by a specialist. The experts also noted a lack of enough trained healthcare professionals to diagnosis and manage the psychosocial issues associated with T1D. This includes primary care physicians and endocrinologists who provide the routine care of people with T1D—and are most likely to observe such issues. The experts identified multiple interventions for psychosocial issues in T1D that are known to provide positive outcomes but are just not widely available due to the limited resources in the healthcare system to support their implementation.

Beginning a dialogue on this important, but little discussed, aspect of T1D is a first step for JDRF. These insights will help JDRF evaluate where we can use this information to better support all the needs of everyone with T1D and those affected by the disease.