9 Things to Know About ARFID

William F. Balistreri, MD


March 09, 2023

Avoidant restrictive food intake disorder (ARFID) is a relatively new clinical concept. As such, it presents a dilemma for clinicians who may not be aware of its existence or struggle with how to properly manage it even when they are knowledgeable about it.

Detecting ARFID in clinical practice requires a proactive approach. A timely diagnosis will allow referral to appropriate behavioral care before significant weight loss or malnutrition develops, but it requires asking the right questions. This overview will help guide your discussions with patients so that you can properly identify, diagnose, and treat ARFID.

What Is ARFID?

This term was introduced in 2013 in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as a replacement or expansion of "feeding and eating disorders in children" listed in DSM-IV. Notably, in DSM-IV, most patients seeking treatment for an eating disorder were classified as "eating disorder, NOS." With the new criteria, however, many of these individuals will be reassigned to a diagnosis with greater clinical utility. This will enable precise, focused research, which will optimize screening and treatment and, hence, improve outcomes.

This diagnosis is increasingly used to describe a feeding and eating disorder characterized by the restriction of adequate nutritional intake, leading to significant weight loss or failure to achieve expected growth, significant nutritional deficiency, dependence on enteral feeding or oral nutritional supplements, and/or marked interference with psychosocial functioning. The ARFID diagnosis is not driven by a desire to lose weight or associated with distorted body image. The DSM-5 lists three primary presentations of ARFID: fear of aversive consequences (eg, fear of choking, vomiting, or gastrointestinal discomfort); lack of interest in eating (low appetite); and sensory sensitivity (heightened sensitivity to taste, texture, color, or smell of foods).

At present, the main issue with ARFID is that providers lack familiarity with this relatively newly recognized condition, which leads to delays in diagnosis and late implementation of optimal treatment and outcomes. Getting to a place of knowledge, however, begins with raising the right questions that would fulfill the criteria for diagnosing ARFID.

How Does ARFID Differ From Anorexia Nervosa?

Establishing diagnostic limits and clear definitions for ARFID remains a work in progress. Although the ARFID phenotypes bear similarities to anorexia nervosa (AN), there are important differences in clinical profile, course, and outcomes. The diagnosis of AN is based on observation of extreme restriction of food intake and fear of weight gain. In contrast, ARFID is a disturbance in eating or feeding pattern without fear of weight gain, drive for thinness, or body dysmorphia that is characteristic of other eating disorders like AN. There are, of course, physical symptoms related to malnutrition that may be present in both AN and ARFID, such as amenorrhea/irregular menstruation, fatigue/lethargy, orthostatic intolerance, and early satiety/delayed gastric emptying.

How Does ARFID Differ From 'Picky Eating'?

Picky eating has traditionally been characterized as the consumption of a limited variety of food, through the avoidance or rejection of both familiar and unfamiliar foods. Picky eating that persists and causes significant distress or impairment related to the consequences of that eating behavior can be diagnosed as ARFID.

In the past, the term "picky eating" has focused on children, but with the reclassification of ARFID in DSM-5, there is an increased focus on the understudied entity of picky eating/ARFID in adult eating behaviors.

What Are the DSM-5 Criteria for a Diagnosis of ARFID?

Persistent failure to meet appropriate nutritional and/or energy needs may manifest as an apparent lack of interest in eating or food, avoidance based on sensory characteristics of food, or concern about aversive consequences of eating.

According to the criteria, these features must be accompanied by at least one of the following: significant weight loss or faltering growth in children; significant nutritional deficiency; dependence on enteral feeding or oral nutritional supplements; or marked interference with psychosocial functioning. There are also key "negative" criteria: The disturbance is not better explained by lack of food or by a culturally sanctioned practice; no disturbance in the way in which one's body weight or shape is experienced; and not attributable to a concurrent medical condition or not better explained by another mental disorder. Notably, DSM-5 states, "When the eating disturbance occurs in the context of another condition or disorder, the severity of the eating disturbance exceeds that routinely associated with the condition or disorder and warrants additional clinical attention." 

How Is the Diagnosis Made?

There are few validated screening tools for ARFID. One tool widely utilized in clinical studies, the Nine Item ARFID Screen (NIAS), is composed of three subscales aligned with ARFID presentations. Murray and colleagues examined the validity of the NIAS subscale (picky eating, appetite, fear) to capture clinically diagnosed ARFID presentations, differentiate ARFID from other eating disorders, and capture ARFID symptoms. They reported that each NIAS subscale had high sensitivity/specificity for capturing those who fit each ARFID presentation, and that the NIAS subscale cutoffs had a high association with a diagnosis of ARFID. When screening for ARFID, they recommend using a concomitant screening tool for other eating disorders (eg, Eating Disorder Examination-Questionnaire [EDE-Q] or Eating Disorders in Youth-Questionnaire [EDY-Q]) in combination with a positive score on any NIAS subscale.

How Common Is ARFID?

Katzman and colleagues determined the frequency of ARFID in pediatric patients during a 2-year surveillance study. Because ARFID is a heterogeneous diagnosis with distinct classes, they divided participants according to the subtypes described in the literature: acute medical (AM), lack of appetite (LOA), and sensory (S). The probability of being classified as AM, LOA, and S was 52%, 41%, and 7%, respectively. The AM class was distinct for increased likelihood of weight loss (92%), a shorter length of illness (< 12 months; 66%), medical hospitalization (56%), and heart rate < 60 beats/min (31%). The LOA class was distinct for failure to gain weight (97%) and faltering growth (68%). The S class was distinct for avoiding certain foods and refusing to eat because of sensory characteristics of the food (both 100%). The authors emphasize the importance of awareness of these different ARFID presentations because clinical and treatment needs vary.

In a community-based survey of 2700 Canadian pediatricians, the incidence of ARFID in 5- to 18-year-old children was 2.02 per 100,000; the mean age was 13 years and 61% were female. Of note, older children were more likely to present with weight and growth issues, but they were less likely to be dependent on supplements. Eating behaviors at presentation also differed by age group, with avoidance/refusal based on sensory issues more common in those aged 5-9 years and "eating, but not enough" and loss of appetite most common in those aged 10-18 years.

How Common Is ARFID in Patients Evaluated in Gastroenterology Clinics?

Common recommendations for patients with digestive diseases include dietary modifications to improve symptoms, encompassing a variety of food avoidance strategies, such as a low-FODMAP diet to treat irritable bowel syndrome symptoms, the Crohn's disease exclusion diet, a gluten-free diet in those with celiac disease, and elimination diets in eosinophilic esophagitis (EoE). It may be prudent to screen for ARFID symptoms when recommending dietary elimination approaches for various gastrointestinal diseases.

In a 2022 study, ARFID behaviors were sought in adults with achalasia, celiac sprue, EoE, and inflammatory bowel disease (IBD). Overall, 54% of the total sample met the diagnostic criteria for ARFID on the basis of the NIAS. Of note, patients adhering to a physician-directed diet showed greater fear of gastrointestinal symptoms, less interest in food, and a higher total NIAS score. The investigators reported a strong relationship between ARFID and poorer social functioning; patients with ARFID were more likely to withdraw socially and feel less able to engage with others. This study also reported that food avoidance/restriction was associated with increased anxiety and depression, as well as diminished health-related quality of life. These findings highlight the value of focused assessments for ARFID in patients with digestive diseases.

Robelin and colleagues reported an overall 17% prevalence of ARFID in 161 adults with IBD based on a positive ARFID risk score on the NIAS. They noted that 92% eliminated food when they had active symptoms and 74% continued to eliminate food even when there were no symptoms. A positive ARFID screen was associated with a higher risk for malnutrition. The authors also noted that clinician recognition of ARFID was poor; of 98 adults with IBD, 10% screened positive for ARFID symptoms, but none were suspected to have an eating disorder by their physician.

Murray and colleagues evaluated patients in a neurogastroenterology clinic with motility disorders and those with suspected disorders of gut-brain interaction (DGBI). The pediatric prevalence of ARFID was 23% and the adult prevalence was 24%. Patients were categorized as "definite ARFID'' (9%) if they met all DSM criteria or "potential ARFID'' (15%) if they met some of the criteria.

There is a high prevalence of eating disorders and psychiatric comorbidity, such as anxiety, in patients with DGBI. The voluntary restriction of oral food intake to prevent symptoms is noted in patients with either DGBI or ARFID, two clinically distinct conditions.

When it comes to patients with ARFID and DGBI, the question is, which is the chicken and which is the egg? Is ARFID behavior secondary to DGBI, meaning the patient is restricting intake in order to reduce abdominal pain? Or is DGBI secondary to ARFID, meaning, for example, that the restricted eating pattern caused constipation? In actuality, ARFID and DGBI may coexist, necessitating clearer criteria for screening and identification of such patients with these overlapping features. This would allow appropriate psychological intervention to be a component of their management.

Of note, a recently published review describes the relationship between gastrointestinal disorders and eating disorders, and provides practical guidance for detection, prevention, and treatment of the gastrointestinal symptoms in these disorders.

How Should We Manage ARFID?

In some centers, the care of those with ARFID has developed into a patient-centered interdisciplinary team approach involving gastroenterologists, dieticians, eating disorder specialists, therapists, educators, and social workers.

Current treatment approaches for ARFID include age-dependent strategies such as cognitive-behavioral therapy, family-based therapy, and parent training. Norris and colleagues described a productive multidisciplinary combination of individual therapy, family therapy (psychology, occupational therapists), medical monitoring (primary care, gastroenterology team, registered dietician), and prescribed medications (psychiatry/gastrointestinal). Pharmacotherapy may ultimately be developed to assist in the optimal management of these conditions, but there are no published controlled trials to date.

Could ARFID's Pathophysiology Inform Future Therapies?

The biological and biopsychological mechanisms of ARFID have been the subject of a few disparate studies with no consensus. One clue is that individuals with ARFID report early satiation, postprandial fullness, and high intermeal satiety. These symptoms may be related to differences in the hormonal cascade that is known to regulate appetite.

One recently published study evaluated fasting concentrations of cholecystokinin, a gut-derived satiety hormone, in children, adolescents, and young adults with ARFID and healthy controls. In those with ARFID, the mean fasting cholecystokinin concentration was significantly elevated compared with controls. Investigators behind the study also reported that cholecystokinin levels were not significantly associated with weight, appetite, interest in eating, or symptoms of ARFID. This observation suggests that cholecystokinin antagonists might be a therapeutic option for ARFID.

William F. Balistreri, MD, is the Dorothy M.M. Kersten Professor of Pediatrics; Director Emeritus, Pediatric Liver Care Center; Medical Director Emeritus, Liver Transplantation; and Professor, University of Cincinnati College of Medicine, Department of Pediatrics, Cincinnati Children's Hospital Medical Center. He has served as director of the Division of Gastroenterology, Hepatology and Nutrition at Cincinnati Children's for 25 years and frequently covers gastroenterology, liver, and nutrition-related topics for Medscape. Dr Balistreri is currently editor-in-chief of the Journal of Pediatrics, having previously served as editor-in-chief of several journals and textbooks. He also became the first pediatrician to act as president of the American Association for the Study of Liver Diseases. In his spare time, he coaches youth lacrosse.

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