Eating disorders refer to psychiatric conditions upon which the primary effect is on eating or feeding. While some struggles with body image may be a normal part of adolescent development, eating disorders encompass thoughts and behaviors that significantly impair an individual’s physical and psychosocial functioning. The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), describes four major eating disorders: anorexia nervosa, bulimia nervosa, avoidant–restrictive food intake disorder (ARFID), and binge-eating disorder [1]. Eating disorders are highly prevalent among young people. A recent review found that in Western nations, the lifetime prevalence of DSM-5-diagnosable eating disorders (anorexia nervosa, bulimia nervosa, binge-eating disorder, and other specified feeding and eating disorders) ranged from 5.5 to 17.9% among young women and 0.6 to 2.4% among young men, with emerging data from Eastern Europe, Latin America, and Asia showing a similarly high prevalence [2]. These studies are likely underestimates, as they did not include individuals reporting ARFID. Since the start of the COVID-19 pandemic, the incidence and severity of eating disorders has increased globally, especially among children and adolescents [3]. Eating disorders, particularly anorexia nervosa, have one of the highest mortality rates of any psychiatric illness [4].

Studies have identified many risk factors for the development of eating disorders, including genetic predisposition, high-risk personality traits, comorbid mental health conditions, family dynamics, social and peer influences, differences in the immune and endocrinological systems, differences in gut microbiota, and in utero exposures [5,6,7,8,9]. Unfortunately, there is evidence that having a chronic health condition, including physical and intellectual disabilities, is another important risk factor in the development of eating disorders and disordered eating. Compared with their peers, adolescents with chronic health conditions are more likely to actively try to lose weight and engage in unhealthy weight control behaviors (e.g., fasting, self-induced vomiting, or the use of diet pills or laxatives) [10,11,12,13,14]. Chronic health conditions are also strongly associated with ARFID [15,16,17,18,19,20] and binge-eating disorder [21,22,23,24]. However, youth with chronic health conditions may also experience more severe medical complications and mortality with eating disorder behaviors than their peers because of the additional risks conveyed by their underlying conditions [23,24,25,26,27,28,29,30]. This is an illustration of the “double whammy” phenomenon described by Sawyer et al. [31]: youth with chronic health conditions are doubly disadvantaged, because compared with their peers, they are both more likely to engage in risk behaviors and more likely to suffer serious consequences from those behaviors.

There are many factors which may place youth with chronic health conditions at higher risk for developing body-image-related eating disorders.

Developing acceptance of one’s weight and/or shape is already a challenging aspect of normal adolescent development, but studies have shown that adolescents with chronic health conditions have poorer body image and higher body dissatisfaction than their peers [10,11,32,33,34,35,36]. Chronic health conditions, and/or the treatments they require, often lead to short stature, delayed puberty, altered body composition, use of assistive devices or medical hardware, or other significant alterations in physical appearance [37]. They may be associated with visible congenital anomalies or dysmorphic physical features. Patients may require treatments that cause weight gain, such as steroids, antipsychotics, or glucose-lowering medications. All of these may significantly impair body image and self-esteem beyond what would be developmentally normal for this age group, greatly increasing the risk for body-image-based eating disorders such as anorexia nervosa and bulimia nervosa and disordered eating behaviors.

Youth who require dietary treatment for their chronic health conditions are at particularly high risk for body-image-based eating disorders. Being taught by health care providers and caregivers to pay attention to nutrition labels, food ingredients, and eating and exercise patterns in order to stay healthy, and having one’s weight monitored far more closely than healthy peers, can draw excessive attention to food and weight that may evolve into disordered eating behaviors or a clinical eating disorder. As such, a higher prevalence of body-image-related eating disorders and disordered eating behaviors have been particularly observed among youth with type I diabetes mellitus [38], celiac disease [39], cystic fibrosis [25,40], inflammatory bowel disease [41], food allergies [42], and inborn errors of metabolism [43].

Among adolescents and young adults, the presence of anxiety and depression may be initiating and/or maintaining factors for eating disorder symptomatology [44,45,46,47]. Multiple types of disordered eating behaviors, such as dietary restriction, purging, and binge-eating, are frequently used as coping mechanisms in response to stress, negative emotions (including sadness, anger, and fear), and poor self-efficacy [48,49,50,51]. Co-occurring psychiatric conditions are also known to worsen eating disorder outcomes [4]. Unfortunately, youth with chronic health conditions are at much higher risk for depression, anxiety, stress, fear, poor self-esteem, and other negative emotions than their peers [36,52,53,54,55], making it more likely that they would engage in eating disorder behaviors.

Adolescents and young adults with chronic health conditions may be particularly predisposed to ARFID [15,16,17,18,19,20]. In fact, one study reported that over 50% of youth with ARFID have a comorbid medical condition [18]. ARFID is an eating disorder that is unrelated to body image but, rather, stems from other mental or behavioral health issues, while the primary effect remains on feeding and eating [1]. These may include fear of adverse reactions from eating (e.g., choking, vomiting, allergic reaction), extremely picky eating that significantly limits intake, or poor appetite cues with little intrinsic motivation to seek out food [56,57]. Though the psychopathology is different, patients with ARFID may experience medical complications of the same severity as those with AN [58,59]. They may also experience a substantial reduction in psychosocial functioning, such as an inability to eat in social situations or outside of their homes, dependency on the use of liquid supplements, or dependence on artificial enteric or non-enteric nutritional supplementation [1].

Youth with chronic health conditions may have a long history of failure to thrive in earlier childhood, which may ‘normalize’ the state of being thin and small even if their underlying condition is now well-controlled. They may have experienced abdominal pain, poor appetite, diarrhea, nausea, or vomiting as symptoms of their underlying condition (e.g., inflammatory bowel disease, celiac disease) or side effects of the treatments they required (e.g., chemotherapy), which may lead to a fear of re-experiencing these symptoms with eating, lack of interest in food, negative associations with food, and/or extreme pickiness. Studies have shown that youth with chronic health conditions may continue to avoid foods even after the resolution of their disease-related symptoms [16]. Some youth may fear having to frequently use the bathroom or empty an ostomy bag after eating, especially when at school or in social situations, which may lead them to intentionally skip meals when outside of the home.

As previously mentioned, youth with chronic health conditions have a high prevalence of anxiety, which is strongly associated with ARFID [20,58]. Autism spectrum disorder and other neurodevelopmental disorders also appear to be significant risk factors for ARFID [60]. Of concern, despite their elevated risk, ARFID appears to be under-recognized in youth with chronic health conditions [15].

4. Early Identification of Eating Disorders

4.1. Detect Changes in Growth Early and Consider a Broad Differential Diagnosis

4.2. Universally Screen Adolescents and Young Adults for Body Image Concerns and Disordered Eating

4.3. If Poor Body Image or Disordered Eating Behaviors Are Identified, Advise the Patient about Disease-Specific Risks and refer Promptly to a Multidisciplinary Team of Providers with Expertise in Eating Disorders

4.4. Partner with All of the Adults in a Young Person’s Life to Facilitate the Earliest Possible Detection of Poor Body Image and Disordered Eating Behaviors