Primary Care Approaches Patricia L. Jackson Allen, MS, RN, PNP, FAAN

Screening for Disordered Eating Behaviors in Adolescents and Young Adults with Type 1 Diabetes Elizabeth A. Doyle

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he term “disordered eating behavior” (DEB) encompasses many different pathological eating behaviors. Clinical eating disorders as specified in the DSM-V (e.g., anorexia nervosa, bulimia nervosa) (American Psychiatric Association [APA], 2013) are considered DEBs. However, DEB also includes other eating behaviors, such as dieting and/or excessive exercise for weight control, binge eating, and purging behaviors. Although a youth who exhibits these behaviors may not meet the diagnostic criteria for a clinical eating disorder, these actions are still dangerous, particularly in the context of type 1 diabetes. Unfortunately, DEBs, including insulin manipulation to control or lose weight, are common in adolescents with type 1 diabetes (Baechle et al., 2014; Goebel-Fabbri, 2013), and are associated with severe complications of diabetes (Peveler et al., 2005; Takii et al., 2008) and an increased mortality (Goebel-Fabbri et al., 2008). Because of the dangers inherent with the co-diagnosis of type 1 diabetes and DEB, it is essential that routine screening for DEB in adolescents and young adults occurs during diabetes follow-up and primary care visits. Although this screening is recommended to be done during quarterly endocrine visits for care of the adolescent/young adult with diabetes, it is important for primary care providers (PCPs) to be aware of DEB, including possible insulin manipulation in adolescents with type 1 diabetes, question the adolescent about possible DEB, and work collaboratively with the endocrine team to monitor such behaviors. The PCP can also assist with arranging mental health counseling and education on potential long-term complications associated with DEB.

Elizabeth A. Doyle, DNP, APRN, BC-ADM, CDE, is an Advanced Practice Registered Nurse and a Certified Diabetes Educator®, Yale Diabetes Center, Yale New Haven Hospital, New Haven, CT, and is a Lecturer and Course Instructor, Yale School of Nursing, Orange, CT.

Background Prevalence/Incidence of Disordered Eating Behaviors in Type 1 Diabetes Many adolescents and young adults with type 1 diabetes struggle with DEB in addition to the challenges of managing type 1 diabetes (Baechle et al., 2014; GoebelFabbri, 2013; Peveler et al., 2005). Goebel-Fabbri (2013) found DEB in 31% to 40% of women with type 1 diabetes aged 15 to 30 years, while Baechle and colleagues (2014) demonstrated that these behaviors exist in young males with type 1 diabetes as well, although to a lesser extent. These authors compared the incidence of DEB in over 600 youth (aged 11 to 17 years) with long-standing type 1 diabetes (greater than 10 years), with a demographically matched comparison group from the general population, and noted 31.2% of the female and 11.7% of the male youth with diabetes had symptoms of DEB. Although the difference in incidence of DEB in youth with type 1 diabetes and the comparison group was not statistically significant, the high percentage of youth with type 1 diabetes exhibiting symptoms of disordered eating was alarming due to the potential increase risk of complications in this cohort, including microvascular complications of diabetes (Peveler et al., 2005; Takii et al., 2008) and a three-fold increase in mortality (Goebel-Fabbri et al., 2008).

Etiology of Disordered Eating Behaviors in Type 1 Diabetes Daneman, Olmsted, Rydall, Maharaj, and Rodin (1998) developed a model of the interactions between eating and weight psychopathology and diabetes management and outcomes in young women with type 1 diabetes. They proposed that there is an initial loss of weight prior to the diagnosis of type 1 diabetes because of excessive glucosuria and insulin deficiency, and after insulin is initiated, the lost weight is quickly regained, often with additional weight gain with intensive therapy. This heightens weight and body shape concerns, resulting in an increased drive for

The Primary Care Approaches section focuses on physical and developmental assessment and other topics specific to children and their families. If you are interested in author guidelines and/or assistance, contact Patricia L. Jackson Allen at [email protected] PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4

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Primary Care Approaches thinness and dietary restraint. As a result, some adolescents with type 1 diabetes then engage in DEB, such as binge eating, and then omit or decrease their insulin to try to lose weight, which leads to poor metabolic control, and eventually, diabetes-related complications (Daneman et al., 1998). Adolescents are further at risk for weight and body concerns because of the normal physiological/metabolic changes that occur during this turbulent developmental time. Sensitivity to insulin decreases significantly with the onset of puberty, and girls are statistically more insulinresistant than boys and can require higher insulin doses (Szadkowska et al., 2008). Larger insulin doses and intensive insulin therapies have been associated with a higher body mass index (BMI), an increase in body fat mass, and weight gain in youth with type 1 diabetes, possibly perpetuating weight and body concerns in children and adolescents with type 1 diabetes (Frohlich-Reiterer et al., 2014; Nansel, Lipsky, & Iannotti, 2013). Other factors have also been associated with an increased risk of DEB in adolescents and young adults with type 1 diabetes. Adolescents who are overweight (p = 0.01), have lower self efficacy (p = 0.005), poorer quality of diet (p = 0.003), and lower diabetes treatment adherence (p < 0.01) (Tse, Nansel, Haynie, Metha, & Laffel, 2012), as well as those who report greater family conflict (Caccavale, 2015), are at higher risk for disordered eating.

Dangers of Disordered Eating Behaviors in Adolescents and Young Adults with Type 1 Diabetes Many youth with type 1 diabetes learn to control their weight by omitting insulin. Baechle and colleagues (2012) found that 20.5% of the female and 18.5% of the male subjects in their cohort of 600 youth with type 1 diabetes reported restricting their insulin at least three times per week. Powers and colleagues (2012) noted that nearly one half of their sample of older adolescents and young adults with a mean age 26.2 ± 10.3 years diagnosed with an eating disorder reported withholding insulin for weight loss purposes. Omitting insulin causes increased glucosuria, resulting in weight loss and poor metabolic control, increasing the risk of long-term microvascular complications of type 1 diabetes (Goebel-Fabbri, 2013). Interestingly, Takii and colleagues (2008) found in their sample of 109 young adult females with type 1 diabetes and clinical eating disorders, significant insulin omission was the eating disorder behavior that was most closely associated with retinopathy and nephropathy. In a prospective study of 87 youth with type 1 diabetes, Peveler and colleagues (2005) observed increased complications in adolescents and young adults with type 1 diabetes who had DEB; 26% had clinical eating disorders or evidence of binging or purging, with 35% of their sample reporting insulin misuse for weight control. Overall, the health outcomes for this group were poor, with significant microvascular complications, and the incidence of severe complications was correlated with the presence of a probable eating disorder (p = 0.03), history of DEB (p = 0.003), and insulin misuse (p = 0.022) (Peveler et al., 2005).

Screening for Disordered Eating In Youth with Type 1 Diabetes Because of the profound risks associated with disordered eating and type 1 diabetes, the American Diabetes 198

Association (ADA) (2016) recommends that individuals with diabetes be routinely screened for psychosocial problems, including depression, distress (diabetes-related), anxiety, and eating disorders. The International Society for Pediatric and Adolescent Diabetes (ISPAD) goes further in their recommendations, suggesting appropriately trained mental health professionals (e.g., psychologist, psychiatric nurse practitioner) assess youth for psychosocial adjustment problems, eating disorders, and other psychological disorders at planned intervals (Delamater, deWit, McDarby, Malik, & Acerni, 2014). In fact, all caregivers involved in the care of adolescents and young adults with type 1 diabetes, whether in a primary care office or a specialty clinic, need to be aware of the potential for DEB in this population. Clinicians should consider DEB as a possible differential diagnosis for youth who exhibit chronically poor metabolic control. If signs and symptoms are not recognized, DEB can go undiagnosed for a significant amount of time in adolescents and young adults (Balfe et al., 2013; Quinn et al., 2015), placing these youth at increased risk for longterm diabetes complications (Bryden, Dunger, Mayou, Peveler, & Neil, 2003; Goebel-Fabbri et al., 2008; Peveler et al., 2005; Takii et al., 2008).

Choosing a Screening Tool In their sample of 43 young adults with type 1 diabetes, Quinn and colleagues (2015) demonstrated that formal screening identified many more young adults who endorse DEB, compared with routine clinical surveillance in a diabetes clinic. When choosing a formal screening tool to assess for disordered eating in youth with type 1 diabetes, the healthcare provider should use a diabetes-specific tool (Markowitz et al., 2010). Diabetes treatment necessitates close attention to food intake, especially the quantity of carbohydrates consumed. With a general eating disorder measurement instrument, this attention to carbohydrate intake at each meal for the management of type 1 diabetes might be misinterpreted as disordered eating (Markowitz et al., 2010). Further, youth with diabetes have DEB techniques unique to their condition, such as the omission of insulin, which would not be included in more general screening measurements for disordered eating (Markowitz et al., 2010). One valid and reliable tool for screening youth with type 1 diabetes for DEB is the Diabetes Eating Problem Survey-Revised (DEPS-R) (Markowitz et al., 2010; Wisting, Froisland, Skrivarhaug, Dahl-Jorgensen, & Ro, 2013). Created initially for young adult women with diabetes (Antisdel, Laffel, & Anderson, 2001), the DEPS was revised by Markowitz and colleagues (2010) to reflect the current more intensive therapy and the use of insulin analogues for treatment. This 16-item self-report, diabetes-specific screening tool for disordered eating has been tested in a sample of 770 youth with type 1 diabetes (ages 11 to 19 years) and was found to have excellent reliability and validity (a = 0.89) (Wisting et al., 2013). The DEPS-R items are scored on a Likert scale from 0 (never) to 5 (always); higher scores indicate greater disordered eating pathology, and it is estimated to take less than 10 minutes for the youth with diabetes to complete this screening tool (Markowitz et al., 2010). A recommended cutoff score of 20 or greater has been empirically established as the threshold, warranting further formal clinical evaluation (preferably by a mental health specialist). The instrument has been used successfully in recent studies of adolescents (Caccavale, 2015; PEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4

Screening for Disordered Eating Behaviors in Adolescents and Young Adults with Type 1 Diabetes Markowitz et al., 2013; Tse et al., fore metabolic control is compro2012) and young adults (Quinn et al., mised. Without formal recommenda2015) with type 1 diabetes. Although tions from the two major diabetes Early screening is there is no cost associated with using practice organizations for the specific critical so youth can this instrument, permission from time interval for when routine its creator should be obtained screening should be completed, receive the needed (Markowitz et al., 2010). providers must use their clinical judgAlthough the DEPS-R is easy to ment. behavioral therapies administer, the additional clinical PCPs and school health proto help prevent the time needed to administer, score, and viders should also recognize the review results with the adolescent or importance of evaluating youth with devastating short and young adult can be challenging withtype 1 diabetes for DEB. When they in the context of a busy primary care have the opportunity to care for a long-term effects of or specialty office. The SCOFF-ED child, adolescent, or young adult disordered eating instrument (the acronym describes with type 1 diabetes, part of the the five key screening questions for health assessment should be to evaland type 1 diabetes. eating disorders – “Sick, Control, One uate the individual’s diabetes manstone, Fat, Food”) (Morgan, Reid, & agement plan and understanding of Lacey, 1999) is a reliable five-question his or her condition. All children and measurement scale for eating disoradolescents should receive surveilders in the general population and was modified by lance and formal screening for mental health concerns, Zuijdwijk and colleagues (2014) to make it diabetes-specific. including DEB. When caring for the person with type 1 diaThe modified version, called the m-SCOFF, replaces the betes the PCP should specifically screen for diabetes-specific fifth general question with the question, “Do you ever take DEB, including insulin manipulation to control weight, by less insulin than you should?” Each question requires a asking, “Do you ever skip an insulin dose, and if so, why?” yes/no answer, and it is considered a positive screen if two and “Do you ever take less insulin than you should, and or more questions are answered “yes” (Zuijdwijk et al., why?” A positive response to either of these questions indi2014). The m-SCOFF has had limited comparative studies cates the need for further evaluation of their diabetes manto determine its validity, but an earlier study has found agement and referral to the endocrine team for additional strong agreement with the Eating Disorder Inventory-3 assessment, formal DEB screening, and follow up. If screen(EDI-3) (Garner, 2004). Additional studies are necessary in ing is positive, then the diabetes provider should collabolarger samples of both females and males with type 1 diarate with the PCP to determine appropriate mental health betes to determine if this short and more convenient diareferrals and course of treatment. betes-specific screening tool is valid and reliable before it can be used in clinical practice. Summary

Who Should Be Screened and When? Because of the high prevalence rate of DEB reported in adolescents and young adults with type 1 diabetes (Baechle et al., 2014; Goebel-Fabbri, 2013; Peveler et al., 2005), this population should have formal screening. This screening should begin during early adolescence and continue through young adulthood. In their most recent guidelines, the ADA (2016) suggests screening individuals with diabetes for psychosocial co-morbidities, such as disordered eating, at the time of diagnosis, at the onset of complications or any other major metabolic change (like the end of the honeymoon phase), if hospitalized, or when they have problems with metabolic control, quality of life, or self-management. ISPAD suggests that appropriately trained mental health professionals assess youth for psychosocial adjustment problems, eating disorders, and other psychological disorders at “planned intervals” (Delemater et al., 2014). ISPAD further emphasizes that these assessments are especially important for youth who have chronically poor metabolic control (Delemater et al., 2014). Unfortunately, a recent study (Quinn et al., 2015) demonstrated that DEBs were not adequately assessed during quarterly diabetes clinical visits in youth receiving care from a diabetes clinical team. Additional research is needed to determine the optimal frequency at which more formal screening should occur for all adolescents and young adults with type 1 diabetes so DEB could be diagnosed earlier bePEDIATRIC NURSING/July-August 2016/Vol. 42/No. 4

Routine screening for DEB in adolescents and young adults with type 1 diabetes should be completed, particularly in youth exhibiting poor metabolic control. Although formal diabetes-specific mental health screening is more likely to occur in the diabetes clinic because of a greater frequency of visits, the PCP should be aware that manipulation of insulin to control weight is a unique DEB found in people with type 1 diabetes and should specifically ask about this behavior whenever caring for children or adolescents with type 1 diabetes. PCPs should work with the diabetes specialist to arrange appropriate follow up for those who screen positive, and provide additional support and education for those affected youth during their primary care visits. Early screening is critical so youth can receive the needed behavioral therapies to help prevent the devastating short and long-term effects of disordered eating and type 1 diabetes. References

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