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Joslin's Lori Laffel, MD, MPH, Explains the Challenge of Transitioning to Self-Care

Andrew Smith
An expert discusses her research on a critical period for patients with type 1 diabetes: moving from having parents make care decisions to taking control of disease management.
As chief of the Pediatric, Adolescent, and Young Adult Section of Joslin Diabetes Center, Lori Laffel, MD, MPH, has more than quadrupled the department’s size and established it as a major center for both treatment and research. During this time, she has maintained a busy clinical practice and performed dozens of clinical trials designed to evaluate the efficacy of everything from new technology for automatic blood sugar management to new strategies for increased treatment adherence. Her achievements have won her widespread recognition as an important innovator in the treatment of type 1 diabetes and formal honors such as the American Diabetes Association’s 2015 Outstanding Physician Clinician Award.1  

What is the focus of your research?

  I pursue a diverse array of clinical investigations, but they all share the common goal of improving both clinical and psychosocial outcomes for pediatric, adolescent, and young adult patients with diabetes. I have worked with many collaborators locally, nationally, and internationally to explore ways to optimize disease management and outcomes, from dietary and exercise interventions to the design, implementation, and evaluation of new diabetes technologies. My team and I also spend a lot of time creating and evaluating educational programs and interventions designed to improve support for young persons with diabetes and their families. Research shows the benefits of a carefully orchestrated approach to diabetes management, one that starts with disease education and realistic expectations and relies upon positive support rather than blame and shame. Motivating family members to provide that support, particularly during the transition from family care to self-care, helps patients tremendously.

Why are you so interested in the period of transition between childhood and adulthood?

  That is the period of life when disease control tends to be at its worst and, therefore, the period when patients most need better support. Blood sugar control in young children with diabetes tends to be close to goal because their parents are constantly around and providing care. There is some deterioration during the early school years and then more during adolescence. This is partially due to the fact that rapid growth during this period necessitates rapid adjustments to insulin dosing and other aspects of their treatment regimens, but an even bigger driver in this change is the transition from parental care to self-care. Glycated hemoglobin (A1C) levels actually tend to reach their highest, more than 9%, at age 19, when physical growth has already tailed off but the social and emotional challenges of transitioning from childhood to adulthood are at their highest. That number eventually falls toward 7.5%, but it takes until age 30. Anything that reduces the increase in adolescent A1C levels or enhances the improvement would be of tremendous benefit to patients in both the short run and the long run.

What does research and experience tell us about when and how the responsibility for disease management should move from parents to children?

  It’s not a jump from no self-care care to entire self-care; it’s a gradual transition. Obviously, a very young child has parents or adult caregivers who do everything, just like a young child without diabetes has parents or other adults who do everyday tasks for him or her. As the child grows, one begins to give responsibility for very small diabetes management tasks, within the child’s developmental abilities, with increasing responsibilities as the child matures. In many ways, you want to follow the normal developmental trajectory of the child as if he or she did not have diabetes. A child with diabetes should probably get to sleep over at a friend’s house or decide what to pack for lunch at about the same time a child without diabetes would be able to do such things—if there are adults willing to assist the child with diabetes management when the child is away from home. You’d have the same talk about making good choices and selecting appropriate food, but you’d also talk about how different choices would affect the amount of insulin the child would need at lunch. A good first step might be seeing that the child can remember to take a snack to guard against low blood sugar when he or she starts going off alone with friends in the neighborhood. And, of course, the child would need to be able to check blood sugar levels when away from home. And then you go from there, one step at a time.

How should diabetes professionals advise parents to evaluate whether kids are doing well with each step in this transition from parental care to self-care?

  Keeping up the dialogue within the family setting is probably the most important evaluation tool. That does not mean diabetes should be the only topic of conversation, or even the first topic of conversation, every time the child comes home from school. Diabetes management is obviously very important, but parents should not focus on it so much that children grow to think their disease is the most important thing in their lives. Parents should start by asking about the stuff that’s important for all kids: how was the math test? How was the soccer game? But they do need to find out how their children are caring for themselves in addition to the other stuff, so they do need to ask questions about self-care: what was your blood sugar reading at lunch? It’s also important to track the results of actual blood sugar tests. Continuous glucose monitors obviously give parents very complete glucose (sugar) data, especially when parents can stay connected remotely via mobile apps. Blood sugar levels, either episodically by finger-stick or continuous glucose levels using continuous glucose monitors, can indicate deteriorating diabetes disease control between clinic appointments with diabetes providers and before the A1C has time to rise.

But parents cannot do it alone. Healthcare professionals are a vital component in monitoring the transition to self-care. We recommend that children be seen at 3-month intervals. This would be true even with perfect adherence to treatment protocols because growth throughout childhood and especially during adolescence requires frequent changes to treatment regimens, and check-ups provide a huge amount of information about disease control, particularly when children are regularly seeing a whole team of caregivers: pediatric endocrinologists, pediatric nurses, pediatric dietitians, pediatric counselors and social workers, among others—like exercise physiologists. Also, every child needs eye exams, but it is particularly important for children with diabetes. The keys are making sure that health care visits are child-centered and offer family support. It can be very hard for patients and families to avoid “diabetes burnout” when it comes to diabetes care, so it is incredibly important to keep coming in every 3 months for visits, year in and year out.

How much potential is there for currently approved technology to improve diabetes care?

 Insulin pumps and continuous glucose monitors, while improving all the time, are able to offer real benefits to patients in their current forms. The FDA has recently approved the first hybrid closed loop system that takes data from a continuous glucose monitor and uses the data to make some automatic adjustments to a connected insulin pump.2 The device still requires a lot of work from patients, who must calibrate the continuous glucose monitor and provide information about carbohydrates and confirm bolus dosing, but it does automate some of the work, and such devices will almost certainly improve glucose control overnight.

Mobile applications that are designed to help people manage their diabetes can also be very helpful. Many patients get good results from programs that help them estimate the number of carbohydrates in a meal by comparing the size of portions they’re eating with pictures of food. Even something as simple as an automated text message that reminds people to check their blood sugar levels at particular times of day can make a difference. We have studied that approach and found that it can reduce A1C levels in certain subsets of patients.   The thing about technology is that it should be considered within the context of an individual patient’s needs. We have talked for years about individualized care, and technology is definitely an area where that comes into play. Technology that works brilliantly for some persons may be challenges for others to use and potentially add burden to their self-care. Technology’s effectiveness can diminish over time, for example, as text message reminders may be helpful for a few weeks or a few months but then the effect may wane as patients tire from the constant reminders. That’s an example of the burnout effect again. Diabetes care can wear people down, so we need to be innovative in our interventions and our approaches, and continually try different approaches that meet patients’ needs. In other words, we need to keep coming up with new ways to keep patients and their families active and engaged.

What are the biggest limitations of today’s technology?

  New technology can certainly improve outcomes, but it may not make self-care easier for every patient. It can actually add more work and potential burden to our patients and families, as I noted before. So, it is important to consider when and if to introduce a new diabetes technology to a patient and family, carefully reviewing the time that would allow the patient and family to eagerly accept the extra time to learn a new management approach. Here are some examples of the extra work. When one uses a continuous glucose monitor, there is the need to insert the sensor, calibrate it against finger-stick glucose values, make sure that the alarms and alerts are set appropriately, and make sure that the data are downloaded and reviewed regularly and shared with the healthcare team appropriately. If one uses an insulin pump, there is a need to make sure that the infusion sites are changed and rotated appropriately, that the insulin reservoirs are filled appropriately, and that the insulin doses are selected appropriately. Every technology we have today—even those that are beginning to automate insulin delivery, all outstanding advances—still require effort from the person with diabetes or from the family member who is helping to support the care of that person.   Fortunately, a lot has improved. We are in an era when some of the technology that’s available to patients can reduce some burden—if you start using this, you can stop doing that. For example, if you use a continuous glucose monitor with the right regulatory approval, you can use the glucose data as a replacement for finger-stick glucose checks to make diabetes management decisions.3 If your continuous glucose monitoring device is calibrated appropriately, you can make management decisions directly from the readings produced by that device. You still have to calibrate the system at least twice a day with finger-stick glucose levels, but you may not have to check 6, 8, or 10 times a day as you once did.

 
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