Emotional Burden of T1D: JDRF Roundtable Discussion and Next Steps

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Type 1 diabetes (T1D) carries with it a huge emotional toll, but doctors are not always akin to the psychosocial ties that T1D brings. That’s why JDRF, with support from Lexicon and Sanofi, held a roundtable meeting to discuss what JDRF can do to lessen the burden of T1D and create a path forward with concrete steps that JDRF and partner organizations can take. There were over 30 people in attendance, from doctors and psychologists to people living with T1D, to address this important, yet often underestimated, aspect of T1D care.

“People with and connected to T1D carry an enormous burden that is sometimes evident and sometimes not,” says Nicole Johnson, DrPH, JDRF’s national director of mission and a longtime diabetes advocate, who shared her personal story of T1D at the 1999 Miss America contest, which she ultimately won. “We know that it is not healthy to cope with a chronic illness is isolation, yet that is all too common.”

Dr. Johnson and Jill Weissberg-Benchell, Ph.D., of the Ann & Robert H. Lurie Children’s Hospital in Chicago, facilitated the meeting, which focused on four key questions:

  1. What is missing generally in diabetes psychology?
  2. What adaptations are necessary for better integration of psychological services into diabetes clinical care systems?
  3. What systems changes are needed to better serve diabetes psychology needs?
  4. What research projects related to diabetes psychology are lacking?

Participants then voted on topics of importance and discussed next steps to outline a path forward. A key takeaway from the meeting was the proposal of a large-scale randomized clinical trial to determine the cost-effectiveness of behavioral interventions. Potential results from the trial could prove to payers that these interventions are able to produce better outcomes, such as reduced low and high blood glucose hospital visits. JDRF will be issuing this and other key takeaways in a summary document, and the next steps that need to be taken. Stay tuned.

“The passion for people exhibited in the room was palpable and something that was emotionally stirring,” said Dr. Johnson. “As we wait for a cure for T1D, which is all of our priority, we are committed to helping people live their best lives possible.”

Thank you, again, to Lexicon and Sanofi, who supported this important meeting.

By Alexandra Mulvey