Eating Disorders in Girls and Women With Type 1 Diabetes: A Longitudinal Study of Prevalence, Onset, Remission, and Recurrence

Abstract

OBJECTIVEGirls and women with type 1 diabetes are at increased risk for developing eating disorders (EDs), and these disorders are associated with serious diabetes-related medical complications. This study describes the longitudinal course of disturbed eating behavior (DEB) and EDs in a cohort with type 1 diabetes. RESEARCH DESIGN AND METHODSA total of 126 girls with type 1 diabetes receiving care for diabetes at The Hospital for Sick Children in Toronto participated in a series of seven interview-based assessments of ED behavior and psychopathology over a 14-year period, beginning in late childhood. Survival analysis was used. RESULTSMean age was 11.8 6 1.5 years at time 1 and 23.7 6 2.1 years at time 7. At time 7, 32.4% (23/71) met the criteria for a current ED, and an additional 8.5% (6/71) had a subthreshold ED. Mean age at ED onset (full syndrome or below the threshold) was 22.6 years (95% CI 21.6-23.5), and the cumulative probability of onset was 60% by age 25 years. The average time between onset of ED and subsequent ED remission was 4.3 years (95% CI 3.1-5.5), and the cumulative probability of remission was 79% by 6 years after onset. The average time between remission of ED and subsequent recurrence was 6.5 years (95% CI 4.4-8.6), and the cumulative probability of recurrence was 53% by 6 years after remission. CONCLUSIONSIn this longitudinal study, EDs were common and persistent, and new onset of ED was documented well into adulthood. Further research regarding prevention and treatment for this vulnerable group is urgently needed.The prevalence, clinical characteristics, and medical consequences of disturbed eating behavior (DEB) and eating disorders (EDs) in individuals with type 1 diabetes has received increasing attention since case reports of this dangerous combination were first published in the 1980s (1,2). Although the specificity of this association was initially unclear, systematic research has demonstrated that teenage girls and women with type 1 diabetes are at significantly increased risk of DEB compared with their nondiabetic peers (3). Such DEB includes dieting, fasting, binge-eating, and a range of compensatory and purging behaviors that can directly interfere with optimal diabetes management. A slide set summarizing this article is available online.

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“…Similar research has also been found that whilst purging behaviours are not significantly associated with a presence or absence of SIB in the ED population (p=.25) they may be used to manage emotion dysregulation [73]. Colton et al [49] propose that insulin omission may be a maladaptive way of avoiding T1DM and that to engage in T1DM self-care anger and grief related to diagnosis may first need addressing [49]. However they and no other study in the review state whether they worked with participants to come to terms with their diagnosis.…”

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“…Neumark-Sztainer et al [10] found high rates of DEB (37.9% in females and 15.9% in males) in adolescents and young adults with type 1 diabetes aged from 12 to 21 years. These EDs tend to first present during adolescence and persist into adulthood, particularly if left untreated [5]. The fact that the vast majority of studies are focused on young females, and that studies regarding adults with diabetes are somewhat scarce, makes it highly likely that a large number of cases of EDs in this population may be underestimated and under-diagnosed [16].…”

“…Subsequently, an increasing number of studies have investigated the presence of insulin omission in samples of diabetic patients, attempting to estimate the prevalence and diffusion of this specific behavior. The findings demonstrate how prevalence increases with age, rising from 1% in pre-adolescence [4], to 11–14% during the initial stages of adolescence [7, 21], reaching 27–39% in late adolescence and early adulthood [5, 21, 22]. A study conducted by Ackard et al on 143 adolescents, 73 males and 70 females, affected by type 1 diabetes, found that 10.3% of females omitted to administer insulin, and 7.4% administered a lower dose, in order to control their weight, versus 1.4% of males [23].…”

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“…Problematic family functioning has been found to be a risk factor for ED as well as ED and T1DM [48]. Difficulties within the family around control and autonomy may reinforce the ED behaviour as it gives the subject control and a sense of achievement [49,50] found that amongst girls with T1DM and eating disturbances selfreported more impaired mother-daughter relationships including less trust and feelings of being alienated by their mother [50].…”