Transitions in Care. Howard A. Wolpert

majority of patients on whom these empirical studies were based experienced their childhood and adolescent years with diabetes during the period before the Diabetes Control and Complications Trial (DCCT) (i.e., before the era of intensive management of type 1 diabetes with the added burden of a more complex treatment regimen that allows for more lifestyle flexibility).

      More recent empirical studies, carried out in the post-DCCT era, have reported findings that contradict these earlier reports of delayed psychosocial maturation in post-adolescent youth with type 1 diabetes. Pacaud et al. (2007) in Canada studied the psychosocial maturation of individuals 18–25 years of age with type 1 diabetes and age-matched control subjects who did not have diabetes. The mean age of respondents in both groups was 22 years of age. The authors concluded that the youth with type 1 diabetes did not differ from healthy peers in terms of psychosocial maturation. Interestingly, there was a tendency for respondents in both groups to score lower than the norms on indexes of responsibility and independence. This study supports Arnett’s theory that it is not until their late 20s that many youth in today’s world begin to assume traditionally more “adult” roles (Arnett 2004). Similarly, Gillibrand and Stevenson (2006) recently studied young people 16–25 years old with type 1 diabetes living in the U.K. and also found that emerging adults with diabetes have normal levels of psychosocial maturation. Of great importance, and a theme that is woven throughout this book, Gillibrand and Stevenson (2006) also found that a high level of family support during this key developmental phase was the strongest predictor of the young adult’s adherence to the diabetes regimen.

      Whereas the cross-sectional studies of Pacaud et al. (2007) and Gillibrand and Stevenson (2006) documented normal psychosocial maturation for young adults with type 1 diabetes, the longitudinal cohort research of Bryden and colleagues in the U.K. identified a subgroup of young adults with disordered eating (insulin misuse for weight management), especially in female adolescents with type 1 diabetes. This disordered eating was strongly related to the development of microvascular complications and mortality among the young adult females in this cohort (Bryden et al. 1999, Peveler et al. 2005). This 8-year follow-up study of a cohort of adolescents with diabetes found that behavioral problems during the adolescent years predicted poorer glycemic control in young adulthood and a significant increase in serious microvascular complications. During the follow-up evaluation of these individuals, 54% of the young adult females were overweight (BMI >25.0 kg/m²), up from 21% at baseline. This weight gain can be an important factor contributing to poor ongoing diabetes self-management and adherence. Over 35% of adolescents and young adult females with type 1 diabetes in the U.K. acknowledged intentional reduction or omission of insulin to control weight (Peveler et al. 2005). Rydall et al. (1997) also followed a group of adolescent females with type 1 diabetes and found high rates of microvascular complications in the young women with disordered eating behavior. Consistent with the findings from the U.K., Goebel-Fabbri et al. (2008) from the U.S. followed an initial sample of 390 women with type 1 diabetes, 30% of whom had admitted to restricting insulin to lose weight. Eleven years later, 234 of the original participants were reached. Findings suggest that insulin restriction conveyed a threefold increased risk of death, underscoring the potential dangers inherent in disordered eating among individuals with diabetes.

      Concerns about weight management and the potentially dangerous strategies youths with diabetes may use to achieve weight-related goals cannot be understated. Findings from the 8-year prospective study previously mentioned by Bryden et al. (1999, 2001) revealed that glycemic control was the worst for the disordered eating subgroup in late adolescence, especially in females. In the Peveler study (2005), the proportion of individuals who were overweight increased for both males and females. A quarter of the male patients and over one-third of females developed complications, and these patients had significantly higher mean A1C levels than those young adults without complications. Psychological and behavioral problems at baseline were related to higher A1C levels across the 8-year study period, indicating that behavioral problems in adolescence significantly influenced glycemic control during the young adult period (Bryden et al. 2001).

      Similar conclusions about the continuity of adherence and glycemic control problems over the late-adolescent/early-adult years have been reported by Wysocki et al. (1992) in a cross-sectional study of 18- to 22-year-old youth with type 1 diabetes. Subsequently, Bryden et al. (2003) published a report that followed a group of young adults 17–25 years of age over an 11-year period into adulthood. There was no improvement in glycemic control over this period. The proportion of patients having serious complications increased over this period, and females were more likely than males to have multiple diabetes complications. Psychiatric symptoms in late adolescence and young adulthood predicted psychiatric problems later in the cohort.

      In summary, the most recent psychosocial research has documented that the majority of post-adolescent youth with type 1 diabetes in the post-DCCT era do not demonstrate delays in psychosocial maturity. However, studies have documented that post-adolescent patients have specialized needs with respect to their diabetes care during the vulnerable and transitional period after high school. Moreover, there is a subgroup of adolescent patients with type 1 diabetes, especially females, who are at an increased risk for the downward cycle of mental health problems (especially disordered eating behaviors and diagnosable eating disorders), poor glycemic control, and the development of microvascular complications of type 1 diabetes. Longitudinal follow-up studies of adolescent patients have indicated that for this subgroup of youth at high risk for the interrelated problems of poor control, psychiatric problems, and diabetes complications, these problems only worsen over the late adolescent and “emerging adulthood” years. Therefore, whether you are a person with diabetes, the parent of someone with diabetes, or a diabetes care provider, if you are concerned about eating issues, weight issues, or other potential emotional and behavioral issues that are known to affect diabetes self-care, please discuss these concerns openly and seek appropriate support from friends, family, colleagues, and mental health professionals.

      Issues That Affect the Transition of Care for Adolescents with Type 1 Diabetes

      The length of time the young adult has had diabetes can be an important factor in the transition of the young adult to independent self-management. For some young adults who have had diabetes since childhood, it is important to explore formative diabetes experiences. Longitudinal studies of pediatric patients with type 1 diabetes in the U.K. and U.S. have reported that behavior problems during the adolescent years clearly predict emotional and physical health complications in the young adult period. The young adult who as a child faced unrealistic expectations for self-care behavior and glucose control and had a legacy of punitive and judgmental medical encounters is especially vulnerable to “diabetes burnout,” a condition characterized by feelings of inadequacy or guilt from chronically failing at diabetes management.

      If the young adult has had a negative socialization experience growing up with diabetes and does not have a solid, constructive relationship with pediatric providers, early transfer to an adult provider (having some experience with adolescents and young adults with type 1 diabetes) may be in the patient’s best interest. One program for post-adolescent youth with type 1 diabetes was reported by Van Walleghem et al. (2006). This study assessed the feasibility and acceptability of an innovative transition service initiated to serve 18- to 30-year-old subjects with type 1 diabetes as they transitioned between pediatric and adult care in Manitoba, Canada. The “maestro” service identified and coordinated access to appropriate support services in the community for young adults with type 1 diabetes. The maestro or “health navigator” was an administrative coordinator who maintained telephone and e-mail contact with the young adults to help them identify barriers to accessing appropriate adult health care services. A comprehensive array of communication channels was established: a website; a bimonthly newsletter; drop-in, informal patient educational dinner events; and patient discussion/support groups. Over the first two and a half years of the project, 79% of eligible patients participated in the program, requesting assistance for both access to care and educational programs. In addition, results indicated that this model of service was feasible and acceptable for young adults with type 1 diabetes as they transition from pediatric to adult care.

      STEVE’S STORY: The Impact of Negative Feedback

      Steve