Juliet is a 16-year-old female who was admitted to the hospital due to chronic abdominal pain, nausea, early satiety, and significant weight loss/malnutrition. She has a long-standing history of intermittent abdominal pain and anxiety and more recently has developed a fear of nausea or vomiting after eating. She denies any concerns about weight gain and reports wishing she could eat like her peers and gain weight.
Jonathan is a 7-year-old male who had a recent traumatic experience where he choked on a chicken bone during dinner. Since that time he has become increasingly afraid of eating most solid foods which has led to rapid weight loss over the past two weeks. His parents report that he appears highly anxious before meals and will often cry and yell when presented with food.Eating disorder treatment programs and hospitals have long encountered this subset of patients who present with food avoidance and low weight but lack fear of weight gain or becoming fat, a core diagnostic criterion of anorexia nervosa.
Under the DSM-IV criteria, the types of patients mentioned above would likely have been diagnosed with eating disorder not otherwise specified (EDNOS). Unlike anorexia nervosa (AN) and bulimia nervosa (BN) which are better defined and understood by providers, EDNOS was often more of a “catch all” category for patients who did not fit neatly into the AN or BN diagnostic criteria. In fact, the majority of patients presenting with eating disorder symptoms were given a diagnosis of EDNOS (Fisher, Gonzalez, & Malizio, 2015; Peebles, Hardy, Wilson, & Lock, 2010).
The EDNOS category was made up of a myriad of patient presentations. For example, EDNOS was a frequent diagnosis for patients with less severe or less frequent symptoms of AN or BN and also for patients with significant medical sequelae related to malnutrition from symptoms such as severe selective eating habits or fear of nausea/vomiting. Due to this range in patient presentation and symptom severity, EDNOS was sometimes perceived as less serious than other eating disorders. For patients like Juliet and Jonathan, this was simply not the case. In fact, there is evidence to suggest that patients with EDNOS were more medically compromised than patients with BN (Peebles et al, 2010) and had similar types of medical complications, although less severe, than patients with AN (Peebles et al, 2010; Strandjord, Sieke, Richmond, & Rome, 2015). Moreover, in a retrospective study Norris et al. (2014) found that almost one third of patients who met criteria for ARFID required hospitalization due to medical instability. Clearly further diagnostic clarification within the EDNOS category was called for and the DSM-5 sought to remedy this in part by further defining this subset of patients.
What is ARFID?
Avoidant/restrictive food intake disorder (ARFID) is defined as an eating or feeding disturbance resulting in failure to meet nutritional needs. This disturbance is associated with one or more of the following: significant weight loss or failure to gain weight as expected, significant nutritional deficiency, reliance on some type of nutritional supplement or enteral feeding, or significant interference with psychological functioning. A key feature that differentiates ARFID from AN and BN, is that the patient with ARFID does not exhibit, and there is no evidence of, concern about weight or shape. The DSM-5 goes on to specify that the eating disturbance cannot be due to lack of food or cultural reasons and is not due to another mental or medical condition. ARFID can manifest in children, adolescents, or adults but is most common in children (American Psychiatric Association, 2013).
Although this is a new diagnosis and much is likely to be discovered about prevalence, associated features, and treatment of this disorder, there is initial evidence regarding characteristics of ARFID. Compared to other eating disorders, patients diagnosed with ARFID tend to be younger, have been ill for longer, have higher rates of comorbid anxiety and medical conditions, and have lower rates of depression (Fisher et al., 2014). Also, a higher proportion of patients with ARFID are males when compared with other eating disorders (Fisher et al., 2014; Nicely, Lane-Loney, Masciulli, Hollenbeak, & Ornstein, 2014). In a recent study, Fisher et al. (2104) identified several common ways ARFID presented in their sample, including: selective eating (28.7%), generalized anxiety (21.4%), gastrointestinal symptoms (19.4%), a past history of vomiting or choking (13.2%), and food allergies (4.1%). Kurz et al. (2016) categorized patients with ARFID in a different manner but also found a high percentage of patients presented with selective eating habits. This study also identified patients with poor food intake related to an emotional disturbance (e.g., anxiety) as well as patients who avoided food due to some specific fear (e.g., choking) (Kurz, van Dyck, Dremmel, Munsch, & Hilbert, 2016). To date there has been one study examining ARFID in adults and there were some differences found from pediatric patients. Specifically, in this study patients with ARFID were all female and most had poor food intake due to emotional difficulties with a smaller percentage due to gastrointestinal complaints (Nakai, Nin, Noma, Teramukai, & Wonderlich, 2016).
Picky Eating vs. ARFID
It is important to note that selective or picky eating is fairly common, especially among younger children (Nicely et al., 2014). Children may avoid foods due to taste, smell, or texture and numerous parents have experienced a phase when their child only ate a select number of foods or refused to eat entire food groups. For many children this will resolve or children will still be able to meet their nutritional needs in spite of low variety of foods consumed. However, when picky eating results in failure to gain weight, significant weight loss, nutritional deficiencies, or issues with psychological functioning, then a diagnosis of ARFID is likely appropriate.
How Can I Tell if My Child is At Risk: Tips for Parents
Some of the reasons for disrupted eating patterns may be more straightforward for parents to identify than others. For example, ARFID symptoms are easier to detect when the child experiences a specific incident such as a traumatic choking episode or a period of vomiting that results in food avoidance and significant anxiety related to eating. Knowing when picky eating or gastrointestinal complaints with food avoidance cross the line into ARFID may be more challenging. The most tangible warning sign for parents is weight loss or lack of weight gain. Many parents do not regularly weigh their child but may notice that their child’s clothing has become baggy, they appear thinner, or they are not growing at a similar rate as their peers. As mentioned above, many children go through a period of picky eating which may be worrisome for parents. Fortunately, picky eating is not necessarily a problem unless it results in health issues or interferes with the child’s functioning in a significant way. When gastrointestinal symptoms accompanied by significant weight loss have been evaluated by a physician and found not to be due to an underlying medical condition, ARFID may be considered. Other warning signs include increased parental frustration that eating has become a “battle” due to their child’s anxiety about consequences of eating (e.g., nausea), narrowing of food preferences, or apparent lack of interest in eating. Parents also may be shocked to find that their child is hiding/throwing away food instead of eating it or not being truthful about the amount of food eaten due to the child’s anxiety about eating.
How Can I Tell if My Patient is At Risk: Tips for Physicians
Given the weight loss and potential medical complications associated with ARFID, physicians may be the first point of contact for these patients and their parents. Physicians may notice that a child has a persistently low percentage median body weight, has “fallen off” of his or her typical weight/growth curve, or that his or her weight/growth curve is trending down (Bryant-Waugh, 2013; Fisher et al., 2014). More specifically, examination of the child’s body mass index (BMI) will help determine if there has been significant weight loss, failure to gain weight, or failure to grow in height at the expected growth trajectory. However, other times clues may be less obvious such as slowly becoming increasingly selective with foods, decreased interest in eating, eating smaller and smaller amounts of food, increased gastrointestinal complaints or general somatic complaints (e.g., headaches, not feeling well, etc.) related to eating, or increased anxiety around meal times. Thus, when physicians notice weight loss or failure to meet expected growth, it is important to inquire further about a child’s feeding patterns, any changes in eating habits, and what seems to be impeding eating such as somatic symptoms or anxiety. Asking parents to bring in a food log or describe their child’s typical food intake can help physicians determine if nutritional needs are being met. Physicians should also look out for medical indicators of nutritional deficiency or malnutrition (Bryant-Waugh, 2013). Signs that indicate the need for hospitalization for medical stabilization include severe malnutrition, bradycardia, hypotension, hypothermia, orthostatic changes in heart rate or blood pressure, or acute food refusal (American Academy of Pediatrics, 2003; Peebles et al., 2010).
How is ARFID Treated?
Like other eating disorders, ARFID has potentially serious medical consequences and early intervention is important. When a child experiences weight loss or failure to maintain expected growth rate, it is important to consult with a medical professional to rule out any medical issues that may be causing the weight loss. This is especially true for children with gastrointestinal complaints accompanied with significant weight loss. Once possible medical explanations for the weight loss/failure to maintain expected growth are ruled out, early referral to providers who specialize in the treatment of eating disorders is recommended. Treatment of ARFID typically involves a multidisciplinary team including a mental health professional who specializes in eating disorders, a physician, and often a dietitian. Children with significant weight loss should be closely monitored for nutritional deficiencies, electrolyte imbalances, cardiac sequelae, and orthostasis throughout treatment. Some may initially require nutritional rehabilitation in a hospital or intensive treatment program.
Since this is a new diagnosis, few treatment studies have been conducted on the treatment of ARFID specifically. Fortunately, early case reports (Bryant-Waugh, 2013; King, Urbach, & Steward, 2015; Norris, Spettigue, & Katzman, 2016) and a recent pilot study (Sharp et al., 2016) have demonstrated effectiveness in treating ARFID. It also is important to remember that clinicians have been treating patients with ARFID for years, even though it was called EDNOS. Thus, there is a much larger research base on the treatment of feeding/eating issues that treatment providers can utilize when developing a treatment plan for a patient with ARFID. These include but are not limited to family-based treatment for AN (the Maudsley approach), cognitive behavioral therapy for anxiety symptoms, and behavioral treatment for feeding issues. Now that the diagnostic criteria for ARFID has been laid out, researchers can focus on tailoring existing treatment techniques to this population as well as developing novel treatments specifically for patients with ARFID.
One factor that appears to be key is matching the type of treatment to the presenting features. An essential first step is accurately identifying the reasons for poor nutritional intake. For example, a patient who is primarily not eating due to fears of choking would likely benefit from methods that have proven to be effective in the treatment of anxiety/phobias (e.g., cognitive behavioral therapy). For patients who present with sensory issues related to eating, behavioral techniques may be beneficial. A child with significant anxiety about gastrointestinal pain or vomiting after eating may benefit from the family-based therapy approach of parents taking responsibility for weight restoration coupled with individual therapy focused on anxiety management.
With the addition of ARFID to the DSM-5, this subset of patients with significant eating disturbance who lack concern about weight or body shape has been formally recognized. However, symptom presentations within this category are broad and range from children with a long history of selective eating to acute food refusal due to a traumatic incident involving food or vomiting. Parents and physicians should be vigilant for changes in weight or eating habits as well as chronic low weight/lack of growth and selective eating. Treatment should include medical evaluation for nutritional deficiency and malnutrition and close follow-up by a multidisciplinary team. It also is important to match the treatment to the reason for the eating disturbance. With proper evaluation and follow-up, the prognosis for patients with ARFID improves.
About the author: Dr. Rebecca Bernard is a Health Sciences Assistant Clinical Professor, Non-Salaried in the Department of Family Medicine and Public Health and a psychologist in the Center for Eating and Healthy Activity Research (CHEAR) in the Department of Pediatrics at UCSD. Dr. Bernard received her doctorate in clinical psychology from West Virginia University, completed her internship at Sharp Health Care, and completed her post-doctoral training at Stanford University. Before beginning her work at UCSD, she was on the clinical faculty at Stanford University and then worked as the Program Director for the children’s residential program at the San Diego Center for Children. Dr. Bernard received extensive experience working with patients with eating disorders as well as patients who have comorbid medical and psychiatric conditions during her time as Program Director for the Medical Behavioral Unit at Rady Children’s Hospital, San Diego/UCSD. Dr. Bernard’s research interests include treatment development and outcome research.
American Academy of Pediatrics. Committee on Adolescence. (2003). Identifying and treating eating disorders. Pediatrics, 111(1), 204-211.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.
Bryant-Waugh, R. (2013). Avoidant restrictive food intake disorder: An illustrative case example.International Journal of Eating Disorders, 46, 420-423.
Fisher, M.M., Rosen, D.S., Ornstein, R.M., Mammel, K.A., Katzman, D.K., Rome, E.S., …Walsh, B.T. (2014). Characteristics of avoidant/restrictive food intake disorder in children and adolescents: A “new disorder” in DSM-5. Journal of Adolescent Health, 55, 49-52.
King, L.A., Urbach, J.R., & Steward, K.E. (2015). Illness anxiety and avoidant/restrictive food intake disorder: Cognitive-behavioral conceptualization and treatment. Eating Behaviors, 19, 106-109.
Kurz, S., van Dyck, Z., Dremmel, D., Munsch, S., & Hilbert, A. (2016). Variants of early-onset restrictive eating disturbances in middle childhood. International Journal of Eating Disorders, 49(1), 102-106.
Nakai, Y., Nin, K., Noma, S., Teramukai, S., & Wonderlich, S.A. (2016). Characteristics of avoidant/restrictive food intake disorder in a cohort of adult patients. European Eating Disorders Review. Advance online publication. doi: 10.1002/erv.2476.
Nicely, T.A., Lane-Loney, S., Masciulli, E., Hollenbeak, C.S., & Ornstein, R.M. (2014). Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorders. Journal of Eating Disorders, 2, 21.
Norris, M., Robinson, A., Obeid, N., Harrison, M., Spettigue, W., & Henderson, K. (2014). Exploring avoidant/restrictive food intake disorder in eating disorder patients: A descriptive study. International Journal of Eating Disorders, 47, 495-499.
Norris, M.L., Spettigue, W.J., & Katzman, D.K. (2016). Update on eating disorders: current perspectives on avoidant/restrictive food intake disorder in children and youth. Neuropsychiatric Disease and Treatment, 12, 213-218.
Peebles, R., Hardy, K.K, Wilson, J.L., & Lock, J.D. (2010). Medical compromise in eating disorders not otherwise specified: Are diagnostic criteria for eating disorders markers of severity? Pediatrics, 125(5), e1193-e1201.
Sharp, W.G., Stubbs, K.H., Adams, H., Wells, B.M., Lesack, R.S., Criado, K.K., … Scahill L.D. (2016). Intensive, manual-based intervention for pediatric feeding disorders: Results from a randomized pilot trial. Journal of Pediatric Gastroenterology & Nutrition, 62(4), 658-663.
Strandjord, S.E., Sieke, E.H., Richmond, M, & Rome E.S. (2015). Avoidant/restrictive food intake disorder: Illness and hospital course in patients hospitalized for nutritional insufficiency. Journal of Adolescent Health, 57(6), 673–678.