child AVOIDANT RESTRICTIVE FOOD INTAKE DISORDER

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http://dx.doi.org/10.2147/NDT.S82538

Update on eating disorders: current perspectives on avoidant/restrictive food intake disorder in children and youth

Mark L Norris1

wendy J Spettigue2

Debra K Katzman3

1Division of Adolescent Medicine, Department of Pediatrics, Children’s Hospital of eastern Ontario, University of Ottawa, Ottawa, ON, Canada; 2Department of Psychiatry, Children’s Hospital of eastern Ontario, University of Ottawa, Ottawa, ON, Canada; 3Division of Adolescent Medicine, Department of Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, ON, Canada

Abstract: Avoidant/restrictive food intake disorder (ARFID) is a new eating disorder diagnosis that was introduced in the Diagnostic and Statistical Manual of Mental Disorders (DSM) fifth

edition. The fourth edition of the DSM had failed to adequately capture a cohort of children,

adolescents, and adults who are unable to meet appropriate nutritional and/or energy needs,

for reasons other than drive for thinness, leading to significant medical and/or psychological

sequelae. With the introduction of ARFID, researchers are now starting to better understand

the presentation, clinical characteristics, and complexities of this disorder. This article outlines

the diagnostic criteria for ARFID with specific focus on children and youth. A case example of

a patient with ARFID, factors that differentiate ARFID from picky eating, and the estimated

prevalence in pediatric populations are discussed, as well as clinical and treatment challenges

that impact health care providers providing treatment for patients.

Keywords: avoidant/restrictive food intake disorder, ARFID, eating disorder, picky eating, prevalence, treatment

Introduction Avoidant/restrictive food intake disorder, or ARFID, was introduced in the Feeding

and Eating Disorders (EDs) section of the Diagnostic and Statistical Manual of Mental

Disorders (DSM) fifth edition (DSM-5).1 The body of evidence on the characteristics,

course, and outcome of children with “feeding disorders of infancy or early childhood”

as defined in the fourth edition of the DSM (DSM-IV) is limited. This DSM-IV diagnosis

relied on the presence of weight loss or failure to gain weight, and failed to account for

circumstances that might allow a patient to stay adequately nourished as a result of the

use of enteral feedings or oral nutritional supplements.2 Further, this diagnostic category

was restricted to children less than 6 years, and put a substantial emphasis on negative or

maladaptive interactions between the child and caregiver. In the years leading up to the

DSM-5, it became apparent that there was a group of children, adolescents, and young

adults who displayed feeding issues that did not fit into the diagnostic categories of

anorexia nervosa (AN) or bulimia nervosa (BN). These patients were often given varying

diagnoses including the residual diagnosis of ED not otherwise specified. Further, this

patient population often required the expertise of a multidisciplinary treatment team to

provide nutritional rehabilitation, medical management, and psychological treatment.

The DSM-5 Eating Disorder Working Group recognized that this subset of individu-

als included children, adolescents, and adults and presented with histories of weight

loss in the context of substantial restriction and often pronounced physiological and/or

psy chosocial distress. These patients were distinct from those with AN as they lacked

Correspondence: Mark L Norris Division of Adolescent Medicine, Department of Pediatrics, Children’s Hospital of eastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa, ON K1H 8L1, Canada Tel +1 613 737 7600 Fax +1 613 738 4878 email [email protected]

Journal name: Neuropsychiatric Disease and Treatment Article Designation: Review Year: 2016 Volume: 12 Running head verso: Norris et al Running head recto: Update on eating disorders: ARFID DOI: http://dx.doi.org/10.2147/NDT.S82538

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body image preoccupation, fear of weight gain, or drive for

thinness. Field studies were conducted to better describe this

group. As such, the Working Group rearticulated the diagnosis

of “EDs of infancy and early childhood” and named this new

ED ARFID. At present, the body of literature that examines

rates and presentation of ARFID in adult patients is extremely

limited. As such, this article focuses on identification and

management of pediatric patients.

What is ARFID? ARFID was introduced in an attempt to capture a cohort of

patients who struggle with impaired and distressing eating

behaviors and symptoms and who lack weight and body

image-related concerns associated with AN and BN. The

diagnostic criteria of ARFID are outlined in the DSM-5.1

In summary, ARFID occurs in cases where patients exhibit

restrictive or avoidant eating behaviors that result in

significant weight loss, growth compromise, a reliance on

nutritional supplements to meet daily energy requirements,

nutritional deficiency (like iron deficiency anemia) or marked

interference with the patient’s psychosocial functioning.

Patients with ARFID do not fear weight gain, are not dis-

satisfied with their body weight, shape, or size and lack

any cognitions typically associated with anorexia nervosa.

ARFID cannot be diagnosed in cases where the presence of a

concurrent medical or mental health disorder can account for

the behavior observed, but may be diagnosed if the severity

of the eating disturbance exceeds that typically associated

with the medical or psychiatric condition in question.1

Research that investigates the clinical utility and applica-

bility of these diagnostic criteria is ongoing and will likely

further inform future revisions of the DSM.

Illustrative case example Susan (the patient’s name has been changed to protect

confidentiality) is a 10-year-old girl described by parents

as always being an anxious child. Her past medical history

was notable for a history of frequent stomach pains (without

medical cause) and school refusal. Six months before being

admitted to hospital, the patient developed recurrent viral

gastroenteritis separated by 1 week’s duration. The patient

believed that the recurrence of symptoms was triggered by the

resumption of eating, and complained of increased nausea,

vomiting, and abdominal cramps whenever she ate. As a

result, over the next few months she progressively ate less

and lost weight. She was assessed and tested for a variety

of medical illnesses (ie, food allergy, celiac disease, thyroid

dysfunction, etc), but no pathology was identified. She lacked

body image preoccupation, fear of weight gain, or drive for

thinness. Her parents began to progressively eliminate foods

that could potentially exacerbate her symptoms (ie, foods

with gluten, dairy products) but with limited effect. She was

eventually admitted to a local tertiary-care hospital where

she underwent a gastroenterology assessment, including

endoscopy, abdominal ultrasound, extensive blood work, and

a dietitian consult. All medical testing was unremarkable and

she was subsequently discharged. The patient continued to

lose weight and was readmitted weeks later having lost 33%

of her pre-morbid body weight.

She was hospitalized under the medical team but failed to

gain weight. The hospital’s multidisciplinary ED team was

consulted and diagnosed Susan with ARFID. The diagnosis

was made based upon the fact that the patient had demon-

strated persistent failure to meet appropriate nutritional and/

or energy needs and had lost a significant amount of weight

in the preceding months. The illness was causing significant

impairment in multiple aspects of her life and could not be

explained by culturally sanctioned practices, the presence of

body image or weight concerns, or a concomitant medical

condition. The patient was started on a treatment plan that

consisted of regular family therapy, individual therapy tar-

geting her anxiety, and olanzapine at bedtime; once weight

improved, her anxiety was also treated with a selective

serotonin reuptake inhibitor (fluoxetine).

The family therapist worked to raise parents’ anxiety

about the seriousness of the illness, and used this to mobi-

lize parents to take control of Susan’s nutritional intake.

Early in treatment, the patient was noted to have regular

temper tantrums, and to sob frequently during meals,

complaining of severe abdominal pain. Susan’s parents

were empowered to stay firm and compassionate and

help their daughter to eat what was expected. Slowly, the

patient began to increase the amount of food eaten, which

led to weight gain and eventually fewer temper tantrums.

Parents were able to consistently increase food intake

whenever weight gain slowed, targeting at least 1 kg of

weight gain per week. Parents were empowered to spend

as much time as possible out of hospital on passes with

Susan and to help her take nutrition at home. Two months

after starting family therapy, the patient was discharged

and at this point in treatment was consuming almost 3,000

calories per day. One month later she reached her expected

weight, at which point her nutrition was slowly tapered

to prevent further weight gain. She was far less anxious,

less labile, and no longer having temper tantrums. Her

only medication was fluoxetine for anxiety. She gained

insight and was able to identify that anxiety made her

stomach hurt. Through individual therapy, she also learned

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Update on eating disorders: ARFiD

some relaxation techniques. Parents were empowered to

set goals of normalizing eating, including helping Susan

to eat a variety of foods and to eat at restaurants. By the

end of therapy Susan was normal weight (having gained

11 kg), back to eating an appropriate amount of nutrition

for her age, and was much calmer and more mature with

better coping skills. She continued to be home schooled

and participated in community-based sports.

More than picky eating As ED experts sought to better understand the clinical

characteristics associated with patients with ARFID, early

media reports stated that the DSM-5 had moved to patholo-

gize picky eating as a psychiatric condition.3 However, the

ARFID diagnosis was meant to identify only those patients

with clinically significant restrictive eating problems that

resulted in persistent failure to meet an individual’s nutri-

tional and/or energy needs, thus eliminating many patients

who are labeled as picky or fussy eaters. Part of the chal-

lenge is that there is no standardized definition for “picky

eating”. Picky eating is generally defined as occurring in

children who are normal weight but consume an inadequate

variety of foods through rejection of foods that may either

be familiar or unfamiliar to them.4 Common characteristics

include limitations in the variety of foods eaten, unwilling-

ness to try new foods (food neophobia), and aberrant eating

behaviors.4 Picky or fussy eating may include rejection of

foods of a particular texture, consistency, color, or smell.

Such food “neophobia” generally peaks between the 2nd and

6th year of life, with gradual reduction over time such that

few are affected beyond their early adult years.5–7 One of the

challenges regarding studies on picky eating relates to the

manner by which patients are identified, which in turn affects

the degree of compromise and impairment reported from

food-related behaviors. Studies have at times reported con-

flicting results depending on the specific population being

studied. This has resulted in a very heterogeneous cohort

that on one side of the spectrum has eating behaviors that

are within the expected developmental trajectory for many

normal children, and on the other side includes children

who exhibit extreme behaviors and severe impairment, more

in keeping with what would now be described as ARFID.

Given these and other challenges related to epidemiological

research, studies of picky eating have reported wide inci-

dence and prevalence ranges, depending on the specific

methodology employed. Prevalence rates for picky eating

ranges from 14% to 50% in preschool children and 7%–27%

in older children.8–13 Cardona Cano et al’s recent population

study on picky eating in children utilized two questions on

the Children’s Behaviour Checklist to establish a diagnosis

of picky eating.13 It was assumed that this would capture all

patients with picky eating, ranging from those who have a

developmentally normative course to those left with sig-

nificant impairment (and therefore possibly ARFID). At the

age of 14 months, infants identified as being picky eaters ate

less, had less variability in the amount of foods consumed,

and had lower caloric intake than non-picky eaters.13 By

the age of 4 years, picky eaters were rated as more fussy,

with higher satiety responses, greater desires to drink fluids,

less pleasure associated with eating, and overall lower food

responsiveness compared to the matched controls.13 Of all

the children sampled, 54.5% were classified as never picky

eaters, 32.3% remitting picky eaters, 4.0% late-onset picky

eaters, and 4.2% persistent picky eaters.13 Risk factors noted

among the persistent picky eater group included male sex,

low birth weight, non-Western maternal ethnicity, and lower

parental income.13 It will be interesting to compare these

results to epidemiological studies of children with ARFID.

However, in the future it will be important that researchers

undertaking nutritional and feeding studies in infants and

children use standardized methodologies and definitions to

ensure that results have applicability and can be compared

ideally across populations.

How common is ARFID? At present, few population studies in EDs have focused or

reported on rates of ARFID; this is not surprising given that

the DSM-5 was released in 2013. As with all epidemiological

studies of EDs, there will be a number of challenges inherent

to answering this question effectively, including challenges

related to the types of studies and populations being studied

(eg, population-based studies, case registries, profiles of

patients attending clinics), the processes that are undertaken

to make diagnoses (eg, clinical interviews, survey questions),

and who develops the research questions (eg, ED experts,

psychiatrists, developmental pediatricians, dietitians). It will

also be important to better understand how eating problems

present in different age groups. There has been very little

research on rates of EDs in very young children. All of these

factors make it difficult to know just how prevalent ARFID

is in children and adolescents.

A British national surveillance study (2005–2006)

documented the incidence of early-onset EDs using modi-

fied DSM-IV criteria as 3.01 cases per 100,000 of which

19% (0.57 cases per 100,000) of those diagnosed lacked

body image issues or fear of weight gain.14 A Canadian

national surveillance study (2003–2005) suggested that

the incidence of early-onset EDs in 5- to 12-year olds was

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Norris et al

2.6 cases per 100,000 person-years.15 In this sample, 26.7%

of cases diagnosed with EDs failed to endorse fears of get-

ting fat or gaining weight, suggesting the possibility of an

ARFID diagnosis (0.69 cases per 100,000).15 Although a

lower overall incidence of EDs was observed in those aged

5–9 years as compared to those aged 10–12 years, rates

of age-specific ED behaviors were not provided. To date,

there is only one community-based study of ARFID, which

documented a point prevalence of 3.2% in a Swiss school-

based sample of 1,444 children aged 8–13 years using a

self-report measure.16

The rates of ARFID have ranged from 5% to 14% among

pediatric inpatient ED programs and as high as 22.5% in a

pediatric ED day treatment program.17–21 Studies have con-

sistently demonstrated that, compared to those with AN or

BN, ARFID patients are younger, have higher proportion of

males, and are commonly diagnosed with comorbid psychi-

atric and/or medical symptoms.17–20

Two non-ED clinical studies have also reported on

rates and characteristics of ARFID patients. In the first,

authors described clinical findings drawn from a case series

of 29 patients presenting with pediatric acute-onset neu-

ropsychiatric syndrome and discussed how features over-

lapped those outlined for ARFID. These patients showed

some similarities to those drawn from ED samples in that

affected children were young, had a high proportion of male

patients (in fact, male to female ratio was 2:1), and also

exhibited comorbid psychiatric symptoms.22 In the second

study, researchers conducted a retrospective chart review of

2,231 consecutive new referrals to gastrointestinal specialty

clinics in an attempt to understand how commonly patients

with ARFID presented. They identified ARFID in 1.5% of

all patients assessed, but noted that some features of the

diagnosis were present in an additional 2.4%, suggesting that

the criteria do not lead to over-inclusion of cases.23 In this

setting, patients were again more likely to be male (67%).23

Although each of these studies adds a different piece to

the puzzle, in combination they only offer us a very crude

guess as to the prevalence rate of ARFID; well-designed

prospective surveillance and population studies are required

to provide a better understanding of the whole picture. The

epidemiology of ARFID in the general non-clinical popula-

tion remains unknown.

Clinical and treatment challenges Patients with ARFID present with complicated and varied

histories and risk factors that include varied medical and psy-

chiatric factors affecting nutritional intake but with no body

image concerns, making referrals to the most appropriate

health care professional or facility challenging. Patients may

be fearful and stressed, reacting to stress or trauma; reacting

to messages about “dangerous” foods or chemicals (such as

fat, sugar, or chemical additives); restricting to avoid pain,

nausea, or risk of choking or vomiting; restricting to avoid

adverse tastes or textures; or reacting to stressful emotions

at meal times. This results in a variety of case presenta-

tions. Few hospitals have dedicated feeding programs that

span the entire pediatric age group and so patients are often

referred to a myriad of clinics depending on the age and

presenting features.18 According to the authors’ experience,

many patients’ first point of contact is usually with a family

physician or general pediatrician. Other children may be

referred to an occupational therapist, dietitian, developmental

pediatrician, gastroenterologist, psychologist, psychiatrist, or

adolescent health physician. The unpredictable referral and

treatment patterns for these cases increase the likelihood that

patients will be left with a vague diagnosis and disjointed

care plan that lacks the kind of specialized coordinated care

that is required to optimize successful outcomes. Clearly,

given the potential heterogeneity of the clinical presentation

of this population, it is critical for health care providers to

have an understanding of the varied presentations of children

and adolescents with ARFID, so they can best diagnose and

develop appropriate treatment recommendations. At present

there are no evidence-based treatment recommendations for

ARFID; however, clinical experience suggests that patients’

needs might differ depending on what factors are thought

to be driving the distress and eating disturbances. As an

example, patients who present with pronounced food restric-

tion and weight loss that has occurred as a result of a fear

of choking may respond best to cognitive strategies to help

address these underlying fears. On the other hand, young

children who present with longstanding histories of poor

growth as a consequence of severe selectivity may utilize

strategies that involve a combination of psychological and

behavioral approaches.

Given the lack of empirical data on the treatment strate-

gies of ARFID, best practice treatment guidelines have not

yet been developed, which potentially increases the risk of

prolonged resource-intensive hospital stays for complex

cases. Interestingly, a recent review examined multisite ED

outcome trajectories and demonstrated that patients with

ARFID were less likely to be followed for 1-year duration,

despite the fact that ARFID patients fared no better with

weight recovery than the other ED groups. The authors sug-

gested that one possible reason for this difference may be

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Update on eating disorders: ARFiD

related to the fact that patients with ARFID were referred into

different therapy modalities outside that offered by the ED

team.21 Further, because the study population was younger,

it is also possible that patients were followed by providers

outside of traditional adolescent medicine clinics. Another

recently published retrospective review revealed that ARFID

patients were more likely than those with AN to be admitted

at lower weights relative to estimated healthy weight, struggle

more with weight gain in hospital, rely on enteral nutrition

during inpatient hospitalizations, have longer hospital stays,

and require rates of readmission within 1 year that mirrored

those with AN.24 Further, patients with ARFID recovered

at a rate similar to patients with AN, although 38% of the

sample continued to struggle in some meaningful way 1 year

after initial diagnosis.24

Future directions Now that ARFID has been identified and defined, research-

ers need to focus on determining prevalence rates, outlining

risk factors, describing patient demographics and case

presentations, comparing different treatments, studying

the effectiveness of medications, and describing the course

of illness and factors that affect outcomes in this patient

population. Studies are required that better define how this

illness presents across the entire life span. Given the real-

ity that many patients with ARFID have complex presen-

tations that often require specialized treatment, it will be

important that clinicians be educated about ARFID, have

knowledge of the diagnostic characteristics of the illness,

and have an understanding of how a patient’s needs should

be managed. Currently, there are no prospective studies that

have reported outcomes on interventions that have targeted

patients with ARFID. As these evidence-based treatments

become available, it will be important to apply treatments

that optimize outcomes in hopes of minimizing morbidity

associated with the illness.

Disclosure The authors report no conflicts of interest in this work.

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