Читать книгу Transitions in Care - Howard A. Wolpert - Страница 9

Emerging adults with diabetes face even more complicated decisions than their healthy peers. The daily demands of diabetes care (which include the need to coordinate daily care, finding appropriate care providers, and the daunting task of access to appropriate supplies and medical care) must be woven into all of the normative choices regarding relationships, occupations, living arrangements, and financial management. The following review of empirical behavioral studies of post-adolescent youth with type 1 diabetes illustrates two ideas central to this discussion: 1) the developmental period after high school represents a distinct period with unique demands separate from adolescence and 2) for a subgroup of young adults, there is continuity between the diabetes-specific adherence and control problems they experienced as adolescents and the ongoing adherence behavior and glycemic control struggles they face over the post-adolescent years. The earliest psychosocial studies of post-adolescent youth (18- to 25-year-old individuals) with type 1 diabetes suggested that these individuals experienced a delay in psychosocial maturation (Jacobson et al. 1982, Kokkonen et al. 1997, Robinson et al. 1989, Kokkonen et al. 1994, Myers 1997). It is important to remember that the 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.