Diabetes and Chronic Illness: A Changing Paradigm
I have been given the honor to be a speaker at a luncheon seminar: Innovations in Chronic Disease- Pediatric Diabetes at the December 2011 World Health Congress- Middle East. I immediately began to list my objectives:
1. To update the latest insulin delivery technology, continuous glucose monitoring systems, and smart phone applications
2. To discuss current research themes
What would be the most important objective to present after updating my colleagues in regard to the "latest and greatest" in pediatric diabetes management?
The answer is based on my clinical experiences with children and families coping with diabetes on a day-to-day basis. How does the diabetes team assist families to embrace and adapt the latest technology and approaches to diabetes management? Behavioral and psychosocial support are the key factors underlying the success of improved therapeutic advances. As I researched the literature for further information, my social worker handed me a book, Bitter Sweet, by Chris Feudtner, published in 2003. The subtext of the book is described on the book jacket: "Diabetes, Insulin, and the Transformation of Illness." What does this all mean?
The discovery of new medications and technology leads to improvement of care and other issues to deal with. For example, 1993 was a landmark year for those of us taking care of children (and adults) with diabetes. As a result of the Diabetes Control and Complications Trial (DCCT), it was demonstrated that multiple daily injections (at least 3 shots/day) of intensive insulin therapy, along with frequent blood glucose monitoring, made a difference in preventing diabetes related micro-vascular complications (kidney, eye, and peripheral nerve). Many years later, additional follow up also demonstrated a decrease in macro-vascular complications (cardiac etc.) Diabetes complications increased logarithmically as hb A1c became greater than 8% percent. As a result of the intensive therapy, there was an increase in the incidence of hypoglycemia. Thus, herein lies the dilemma.
New insight improving diabetes care leads to new problems for people with diabetes and the diabetes healthcare team. It became clear that to decrease dreaded complications, people with diabetes needed to "tighten" glycemic control at the expense of hypoglycemia, which then presents additional concerns with which to manage. The insulin pump, thought to be the most advanced form of insulin delivery, was lauded as one of the greatest inventions ever for management of diabetes, delivering insulin continuously in minute amounts with multiple basal rates and insulin/carbohydrate ratios/correction factors programmed in the pump. People with diabetes just entered the blood sugar result and the amount of carbs, pressed a button and insulin is delivered in the amount desired. What about the potential for occlusion, kinked tubing, pump computer malfunction, forgetting to bolus, catheter issues, ketones, etc.? We now have to manage these potential problems to take advantage of the benefits associated with insulin pump therapy. The changing technology continues to offer improved blood glucose management with an increased requirement for self-care skills.
Low blood sugar issues? The continuous glucose sensor might be just for you. Only, you have to implant another sensor into the subcutaneous tissue, calibrate for an extended number of hours, listen to (or ignore the false alarms), note the blood glucose trends on the sensor, and actually increase blood glucose monitoring and bolus accordingly. More behavioral change is required to accommodate the new technology.
I am sure you are getting the picture. As we enhance our technology and treatment for chronic illness, new adaptations are continually necessary for people with the disease. Adaptation is difficult. Behavior change is even more complex. I decided to list as my third objective: the new "old" innovation of "psychosocial and behavioral support." It has become clear that without the necessary behavioral intervention and support systems, management of chronic illness would be virtually impossible. Research in behavioral change and adaption continues to be essential as the treatment of chronic diseases such as diabetes evolves.
In summary, it is one thing for the healthcare provider or caregiver to know what to do (based on current technology and research), but a totally different thing to get the person with diabetes (or a chronic illness) to actually do it.