Published onChildren's Doctor
Read a case study from the Diabetes Center about an 16-year-old female and her family negotiating living with diabetes through the teen years.
Amy Lee is a 16-year-old junior at a local high school where she is an average student, plays on the traveling soccer team, and plans to attend college or join the military after graduation. Over the past year, there has been a noticeable increase in tension between Amy and her parents. Amy feels that her parents are intrusive and unreasonable. Recently she has requested permission to obtain a learner’s permit and is dating a boy with whom she spends a significant amount of time. Amy’s parents do not approve of the boy and have good reason to believe that there is alcohol involved in some of Amy’s weekend activities.
This scenario includes many of the challenges that providers who care for adolescents encounter on a daily basis. Now add the overlay of type 1 diabetes: Amy has had diabetes since she was 3 years old and has worn an insulin pump since she was 7. Although her diabetes control has slipped (last Hba1c 8.2%), previously she was in excellent control (no hospitalizations for DKA, hypoglycemia; Hba1c 6.8-7.3%). Until Amy was 14, Mrs. Lee was the primary manager of Amy’s diabetes, and until recently Amy followed the rules and was very cooperative. She is now sullen, noncommunicative, and angry much of the time.
The Diabetes Center for Children at The Children’s Hospital of Philadelphia is developing a program specifically to support adolescents with diabetes and their families as they negotiate living with diabetes through the teen years. Building blocks for this program include:
- A multidisciplinary team with expertise in diabetes and adolescent issues
While risk-taking behaviors involving smoking, drinking, driving, and reproductive health are common to all adolescents, the combination with diabetes presents significant additional risk. Teens need reliable information about the reciprocal impact of risk-taking behavior and diabetes, but also can benefit from social and problem-solving skills necessary to minimize their risks and manage social situations that affect diabetes. In addition, the clinical care of diabetic adolescents requires screening these vulnerable patients for depression and eating disorders.
- Coordinated care for adolescents with complications and co-morbidities of diabetes
Routine screening for complications and co-morbidities of diabetes will identify a small number of adolescents who are positive for microalbuminuria, hypertension, and hyperlipidemia. While these conditions are routinely treated by the endocrinologist or internist in adult care, they are less frequently managed within the context of a pediatric endocrine visit. Adding adolescent/ pediatric medical specialists to the team facilitates the development and implementation of an evidence-based practice approach for screening and treating diabetes co-morbidities and complications. We expect this comprehensive coordinated model of care to ultimately increase patient adherence by eliminating the need for separate appointments with multiple specialists.
- An education program that is teen-focused and engages teens on a trajectory of increasing independence in diabetes management
Preparing children to participate in their diabetes care starts in the elementary years, but is really critical in the teen years when youth become more independent and spend more time with peers. Instructional tools available for teaching about self care management tend to be written materials that are generic in nature. Offering varied educational approaches in developmentally appropriate formats more effectively engages pre-teens in learning self-care management and problem-solving skills. We are developing targeted, innovative interactive strategies using e-learning formats. This also involves helping parents adjust their relationship with their child to remain involved while allowing increasing independence. This delicate balance of letting go safely is supported by providers who understand the challenges of both diabetes and adolescence, and who can support parents as their role evolves from that of primary managers to consultant to their teens.
- A formal structure for ensuring a smooth transition into adult care that begins in early adolescence
Preparing teens for entry into the adult care system requires changing the way clinicians relate to patients and their parents in a clinic visit. Adjusting the structure and dynamics of an appointment —by shifting focus from parent as historian to patient as the primary information source—can be especially challenging when a provider has been working with a family over many years. While this process begins before adolescence, it is in the teen years that the transition away from a parent/family-centered care interaction a really occurs. Negotiating time for the adolescent to be alone with the provider during the appointment is essential to allow him or her the opportunity to privately discuss concerns and issues. This transition to a teen-centered visit clearly signals a transfer of responsibility for important tasks including making appointments, understanding requirements for referrals, writing down questions, remembering to bring logs/meter to the visit and keeping track of supplies.
To refer a patient to the Diabetes Center for Children, call 215-590-3174.