Transitions in Care. Howard A. Wolpert

at the University of Texas, originally from New Jersey, was diagnosed with type 1 diabetes when he was 8 years old. Steve has not seen a diabetes clinician during the 4 years he has been in college in Texas. He is an engineering major and is now looking for jobs after he graduates. Steve is on a regimen of two injections a day and has not monitored his blood glucose at all during college. For the first time, Steve is having frequent “insulin reactions” as he is beginning his job search. Therefore, Steve decides to see a doctor in Texas for his diabetes. When he meets with the diabetes team, he reports that he takes two shots a day, does not change his insulin dose, and does not check his blood glucose levels. When the educator tells him that his A1C is 10% and that he needs to check his blood glucose to adjust his insulin dose, Steve says, “Just tell me how much more insulin to give. I don’t want to get back into that horrible grind of checking my blood sugars.” Steve reports that his diabetes team in New Jersey made him feel that he could never get his A1C or his daily blood glucose in the “right range,” although he monitored his glucose three to four times each day in high school. And he reports that his parents always criticized his blood glucose numbers, convinced that he was sneaking all of the wrong foods behind their backs. In fact, they took away the keys to his car if he had a lot of blood glucose levels that were not in the right range. Steve’s experiences as a teenager monitoring his blood glucose were so negative that he feels he cannot face the possibility of monitoring his glucose levels again. For Steve, blood glucose monitoring led to feedback that was blaming, threatening, and demoralizing. Steve has diabetes burnout.

      The maestro program’s focus on improved communication was an important key to their success, as concerns about poor communication between families and providers have been noted as barriers to successful transitions. Two large population-based surveys of youths receiving medical care for a variety of conditions, with sample sizes of at least 4,000 in each study (Lotstein et al. 2005, Scal and Ireland 2005), found that only half of the parents talked about transition issues with their child’s physician, and of those who did discuss these issues, only 30–42% discussed shifting care to an adult provider. Similarly, adolescents do not feel that they receive adequate information regarding transition issues (Telfair et al. 2004), and they worry about leaving their familiar health care team for an unknown medical provider. In a study in youth with diabetes, Eiser et al. (1993) found that youths conceptualized pediatric programs as family-centered, informal, and socially oriented. In contrast, they conceptualized adult programs as more formal, with an emphasis on the risks of long-term complications. Dovey-Pearce et al. (2005) found that youth with diabetes want to work with clinicians who try to integrate their life circumstances into recommendations for diabetes care.

      The need for improved communication and information sharing when fostering successful transitions was underscored by studies conducted by Pacaud et al. (1996, 2005). These authors surveyed patients with diabetes who had been transferred from a pediatric program to an adult program. The first survey occurred in Montreal and the second (almost 10 years later) occurred in Alberta. The findings from these surveys were the same: 31% of the adolescents had a lapse of over 6 months between their last pediatric visit and their first adult visit, with 11% lost to follow-up. Young adults expressed the belief that their transition was abrupt, that they lacked information about resources, and that it was difficult to coordinate all of the subspecialties they needed to see (e.g., endocrinologist, dietitian). Similarly, Kipps et al. (2002) assessed patient perceptions regarding transition experiences for 229 youth with diabetes. Although 90% transitioned to adult services at 17 years of age, only 61% regularly attended an adult care program 2 years after transfer.

      Some patients will transition easily. Others may benefit from continuing to follow up with familiar pediatric providers and educators during the vulnerable post–high school period and delay transition to adult care until the distractions and insecurities of this period have passed. Discussions about transition issues during the early adolescent years among all of the interested parties (patient, parent, provider) will likely help. In addition, establishing effective means of communication and scheduling a meeting with the adult provider before making the transition (Brumfield and Lansbury 2004) seem to increase the likelihood of success. Finally, longitudinal research by Bryden and colleagues suggests that teens who display behavioral difficulties during adolescence experience poorer glycemic control as young adults. Therefore, openly discussing past emotional and behavioral issues is also an important goal in transition planning.

THE SECOND PHASE OF THE YOUNG ADULT PERIOD

      During the second phase of the young adult period (typically between 23 and 30 years of age), there is often a maturing sense of identity and more “adult-like” roles in society, such as a stable intimate relationship, employment, and financial independence. This phase, when the individual starts making plans about his or her future life, is usually accompanied by a growing recognition of the importance of striving for better glycemic control and a receptiveness to improving self-care behavior. Life partners can be important supports and agents for change, and a shared sense of investment in the future will often catalyze this change in self-care behavior. This period (when lifelong patterns of behavior are set) can be a critical “window of opportunity” for health care and educational interventions. Health care providers and educators have a crucial role at this stage in preparing and motivating the young adult with diabetes to assume self-management responsibilities.

      JIM’S STORY: Finding a Diabetes Team That Fits Your Lifestyle

      Jim is a 27-year-old young man who has had diabetes since age 11. Jim’s parents were very involved in diabetes management throughout his adolescence, and his father followed a structured daily exercise routine and meal plan just like Jim’s to provide support. Jim went to college in his hometown and lived at home. During this time, his parents maintained their support and structured routines for diabetes care. After college, Jim moved away to New York City for a job opportunity in the financial area, and he got very caught up in the fast-paced banking world in which he worked. However, he was not able to maintain his strict approach to eating and exercise with his new lifestyle in New York City. His new peers ate out for most meals and the portion sizes were considerably larger than he was used to. He became very depressed about not exercising and about overeating, and he steadily gained weight. Jim was feeling discouraged about his diabetes management, and for the first time, he felt it was too much to handle. The turning point in his thinking about diabetes self-care came when he decided to enter law school and met a young woman there and became engaged. With her encouragement, Jim finally sought out a new diabetes team in New York City, and his educator and doctor introduced him to the idea of carbohydrate counting and multiple daily insulin injections, which allowed him to have a more flexible lifestyle that fit his work and life in New York City.

      P A R T

       Two

      Getting Prepared for Your Journey

      with Diabetes through Young Adulthood

      YOU DON’T NEED A SERMON, BUT THE BASICS WON’T HURT

      There’s a good chance that from the minute you were diagnosed with diabetes, you’ve been overwhelmed with the same message: Get your blood glucose under control and your chances for a long, complication-free life will dramatically increase. We could give you examples, such as the DCCT, where over 1,400 individuals with diabetes were divided into two groups: a “conventional” group that took up to two insulin injections a day (which was the usual standard of care at the time the study was started in the 1980s) and an “intensive” group that used multiple injections or an insulin pump. As you probably already guessed, the intensive group ended up in a lot better shape. In fact, they had less than half as many severe eye, kidney, and nerve complications as people in the conventional group.

      But you probably already knew this. Maybe not specifically, but you had a good idea that better blood glucose control means healthier living. So you don’t need any more sermons from health professionals! You know why