Transition into Better Care

Written By: Saima Murtaza-Vahed,  M.Sc., RD, CDE, CPT - Trillium Health  Partners, Mississauga, Ont.

Becoming an adult, leaving high school, going away to university or college, and/or starting a full-time job are all part of the challenges that young adults face. Young adults with type 1 diabetes also face the added pressure of having to develop relationships with new healthcare providers at a different adult diabetes centre, and of starting the process of managing their diabetes all by themselves.

One study showed that only 18 per cent of young people over 19 years of age are achieving their recommended glycated hemoglobin (A1C) targets (1). What are the reasons for this inability to reach A1C targets? The teenage brain: research done over the past 10 years has shown that the prefrontal cortex of the teen brain is not fully developed until they reach their mid-20’s. Because the prefrontal cortex curbs impulsive behaviour, this leaves teens easily influ- enced by their environment and unable to fully assess risk. This has a profound impact on how transitioning type 1 individual’s will handle their diabetes during these years. It can result in them living in the moment, meaning there’s less chance they will look ahead to prevent complications (2).

Even after you take into account the impact of the regular teenage brain on behaviour, there are also other factors that make the transition to adult- hood with diabetes more challenging. Patients with anxiety, depression or attention- deficit disorder have an added load to carry that can make managing the day-to-day burdens of diabetes even harder.

With the amount of work involved in being in school, holding a part-time job or living independently, coupled with testing blood sugars, taking insulin, dealing with hypoglycemia and hyperglycemia, and going to appointments, it is no wonder many young adults end up struggling with diabetes burnout.

Even the most well-intentioned family can have problems during the teenage years. However, having systemic family issues can derail the teenage ability

to self-manage their diabetes. At our clinic we have seen families where the parents are overly involved with their young adults’ diabetes care. As a result, the young adults struggle more and they run the risk of falling into a pattern where rebellion and rejection of nagging defines the way they handle diabetes.

Having a bad experience with a low blood sugar level can end up creating a cycle of anxiety. These patients no longer feel safe, and are terrified of going low. As a result, they are more likely to over- ride their insulin pump, to keep their blood sugar levels high to feel safe, to test their blood sugar every hour, and to feel the effects of their anxiety spill over into other areas of their life.

Starting over with a new healthcare team at an adult diabetes centre also poses challenges. This can be even more profound if there isn’t an aware- ness of how to successfully transition these young type 1 individuals over to a new adult centre.

We all know of young adults who transition successfully while maintaining good control of their diabetes. What can diabetes educators do to help those teens who struggle with the transition to adult life?

Develop a Relationship with Your Young Adult

If we can get to know them and really understand what makes them tick, we will have insight into how to help them find the motivation to take care of themselves. The best way to get to know them is to be curious and non-judgmental. Get to know their interests, what their career plans are, what kinds of sports they like, where they go on vaca- tion and what kinds of books they read. Studies have shown that the healthcare professional and patient relationship highly influences the emotional experience of the disease and the way patients gain control over it (3).

Change the Way They Think About Their Appointments

It is hard for anyone with type 1 diabetes to come in and see all their high or low blood sugar levels highlighted so we can discuss how to prevent them. Surprise them by pointing out what they are doing well! Get them to think differently about the purpose of their appointment. Explain that these appointments are designed to give them a space to talk about their diabetes with someone who will not judge them, who knows how hard it is to have diabetes and who will be a resource for them if they need help. We can give them all sorts of ideas, but they get to decide which ideas work for them.

Ask Them About Their Goals

Is excellent diabetes control their goal? Based on their current life and stage, coping with exams and part-time jobs, they may be content with their current control, even if it is not at a target A1C of seven per cent. Understand that testing, looking for blood sugar trends and perfect carb counting is a lot of work and, depending on life circumstances, may not be the most important thing on their list at this time. In focus groups and surveys, patients have stated that healthcare professionals need to be more appreciative of the difficulties of living with type 1 diabetes (4), and they need to understand that persons with type 1 diabetes “can’t always be dialed in to taking perfect care of their diabetes.”

Make More Excuses for Them Than They Would Make for Themselves

This concept can change the way you talk to all your patients. Rather than giving people permission to not take care of their diabetes, hearing excuses from you can actually lessen the defensive- ness people feel when talking to a healthcare professional. Removing judgment from the interaction makes it more likely that they will stop and reflect on what they want to do differently.

Ultimately You May Just Need to Be Patient

We have many examples of young adults who are managing their diabetes well especially given all the changes they are experiencing in their lives. However, young adults just need time to mature. If we can develop a relationship with them and keep them coming back by providing a positive and non-judgmental environment, then they may just “get it” by the time they are 24. The hope is that having a good relationship with their educator will make it easier for them to reach out when they are in trouble, or when they are ready to improve the way they manage their diabetes.

References

1.        Peters A, Laffel L; American Diabetes Association Transitions Working Group. Diabetes care for emerging adults: recom- mendations for transition from pediatric to adult diabetes care systems: a position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of

Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, The Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes Care. 2011;34:2477-85.

2.       Colver A, Longwell S. New understanding of adolescent brain development;  relevance to transitional healthcare for young people with long term conditions. Arch Dis Child. 2013;98:902–7.

3.     Escudero-Carretero, MJ, Prieto-Rodriquez MA, Fernandez- Fernandez I, March-Cerda  JC. Physician/patient relationship in diabetes mellitus type 1 treatment. A qualitative study. Atten Primaria. 2006;38:8-18.

4.     Richards G, Morris M, Booker S, Johnson A. What do people with type 1 diabetes find helpful  in health professionals? Results from

a focus group study. Pract Diab Int. 2006;23:240-52.