Prevalence and Characteristics of Avoidant/ Restrictive Food Intake Disorder in A Cohort of Young Patients in Day Treatment For Eating Disorders
Prevalence and Characteristics of Avoidant/ Restrictive Food Intake Disorder in A Cohort of Young Patients in Day Treatment For Eating Disorders
Prevalence and Characteristics of Avoidant/ Restrictive Food Intake Disorder in A Cohort of Young Patients in Day Treatment For Eating Disorders
Abstract
Background: Avoidant/Restrictive Food Intake Disorder (ARFID) is a “new” diagnosis in the recently published DSM-5,
but there is very little literature on patients with ARFID. Our objectives were to determine the prevalence of ARFID in
children and adolescents undergoing day treatment for an eating disorder, and to compare ARFID patients to other
eating disorder patients in the same cohort.
Methods: A retrospective chart review of 7-17 year olds admitted to a day program for younger patients with eating
disorders between 2008 and 2012 was performed. Patients with ARFID were compared to those with anorexia nervosa,
bulimia nervosa, and other specified feeding or eating disorder/unspecified feeding or eating disorder with respect
to demographics, anthropometrics, clinical symptoms, and psychometric testing, using Chi-square, ANOVA, and
post-hoc analysis.
Results: 39/173 (22.5%) patients met ARFID criteria. The ARFID group was younger than the non-ARFID group
and had a greater proportion of males. Similar degrees of weight loss and malnutrition were found between
groups. Patients with ARFID reported greater fears of vomiting and/or choking and food texture issues than
those with other eating disorders, as well as greater dependency on nutritional supplements at intake. Children’s
Eating Attitudes Test scores were lower for children with than without ARFID. A higher comorbidity of anxiety
disorders, pervasive developmental disorder, and learning disorders, and a lower comorbidity of depression,
were found in those with ARFID.
Conclusions: This study demonstrates that there are significant demographic and clinical characteristics that
differentiate children with ARFID from those with other eating disorders in a day treatment program, and helps
substantiate the recognition of ARFID as a distinct eating disorder diagnosis in the DSM-5.
Keywords: Avoidant restrictive food intake disorder, Children and adolescents, Day treatment, DSM-5
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reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain
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unless otherwise stated.
Nicely et al. Journal of Eating Disorders 2014, 2:21 Page 2 of 8
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addition, the DSM-5 as a whole has attempted to take a failure to gain appropriate weight, may occur. Studies
developmental, or life-span, approach to all disorders. have shown a higher prevalence of boys with selective
Feeding Disorder of Infancy or Early Childhood, a eating, as well as a high degree of co-morbid anxiety
diagnosis in the DSM-IV, delineated a persistent eating [11,12].
dysfunction leading to weight loss or failure to gain Functional dysphagia is a fear of swallowing or an
weight, with the requirement that patients be less than inability to eat or swallow food, especially solid or lumpy
six years of age. This was a non-specific diagnostic cat- foods. There is generally a fear of gagging, choking, or
egory that was rarely used in practice and for which vomiting, often subsequent to actual traumatic episodes
there was insufficient literature [4]. A great number of or witnessed episodes. Sometimes an illogical connection
patients are over six years old at the time of initial ED in the child’s mind leads to development of the phobia.
evaluation, even if some have had symptoms from an Some children present with food refusal specifically
early age, and have been necessarily given the diagnosis out of fears of vomiting, contamination, poisoning, or
EDNOS in the past. Feeding Disorder of Infancy or Early defecation as well. Many cases of acute food refusal due
Childhood also excluded those children with abnormal to specific fears present clinically malnourished and ill,
eating patterns or nutritionally deficient or limited diets, as they often lose weight rapidly. They can easily be mis-
but who were growing normally secondary to sufficient taken with AN on initial presentation due to the severity
caloric intake, possibly due to the use of nutritional supple- of the restriction; however, they are not concerned with
ments. The inability of DSM-IV to capture such patients weight or shape [4,5].
was significant, as they often presented with considerable The DSM-5 has subsumed and expanded Feeding Dis-
impairment, both physically and functionally [5]. order of Infancy or Early Childhood to capture a greater
Clinicians and researchers have long recognized specific number of patients who present with avoidant or re-
types of EDs that fall under the umbrella of EDNOS. The strictive eating, but are clearly different from those with
Great Ormond Street (GOS) classification system cap- AN in that there are no disturbed cognitions about weight
tured a way to describe these types of patients, and was and/or shape, or a wish to lose weight. It has been renamed
often utilized by clinicians for descriptive purposes. These Avoidant/Restrictive Food Intake Disorder (ARFID) and
criteria were actually found to have a higher inter-rater includes those types of patients recognized in the GOS sys-
reliability for younger patients than the DSM-IV [1]. tem. Patients with ARFID may present with clinically sig-
The GOS categories include: Food Avoidant Emotional nificant restrictive eating leading to weight loss or lack of
Disorder (FAED), Selective Eating, and Functional Dys- weight gain, nutritional deficiencies, reliance on tube feed-
phagia, as well as Anorexia Nervosa (AN) and Bulimia ing or oral nutritional supplements and/or disturbances in
Nervosa (BN). psychosocial functioning (see Table 1) [13]. Additionally,
FAED was first described as a combination of inad- they may exhibit similar physical signs and symptoms as
equate food intake and emotional disturbance; these patients with AN due to semi-starvation.
young people knew that they were underweight and Very little has been published on patients with ARFID.
wanted to be heavier, but found this difficult to achieve [6]. Recently, a large multicenter study of children and ado-
The GOS system further clarified this group, and differen- lescents presenting as new patients to adolescent medi-
tiated their presentation by the absence of weight and cine ED programs, revealed a 14% prevalence of ARFID,
shape concerns in the presence of significant food restric- with unique clinical characteristics, including younger
tion. Somatic complaints were frequent as well as more age and a greater number of males [14,15]. An 11-year
general psychopathology, e.g. generalized anxiety [4,5]. retrospective chart review of adolescent ED patients in
Selective eating, also known as “picky eating”, is a Canada reported a 5% prevalence of ARFID [16]. These
common problem of childhood, with anywhere between patients were compared to a matched sample of AN pa-
13 to 22% of children between 3 and 11 years of age tients, and demonstrated a younger age at presentation,
being reported to be picky eaters at any given time [7]. and a higher likelihood of being male. There were spe-
While young children are typically thought to “grow out cific behaviors and symptoms in the ARFID group, in-
of” their pickiness, studies have shown that between 18 cluding food avoidance, decreased appetite, abdominal
and 40% of the rigidity concerning food persists into pain, and emetophobia. Both of these studies included
adolescence [8-10]. Patients with selective eating are all new patients presenting for initial assessments to
usually not underweight, as they take in adequate calo- tertiary care ED programs.
ries from preferred foods, but their diets may be lack- Due to the dearth of literature on ARFID, we sought
ing in micronutrients. Some selective eaters have to determine the prevalence and clinical characteristics
sensory concerns related to the taste, smell, color, or of ARFID in young patients admitted to a day treatment
texture of foods, which may limit their intake to such a program for EDs, and to compare patients with ARFID
narrow range of acceptable foods that weight loss, or to those with AN, BN, and Other Specified Feeding or
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Eating Disorders/Unspecified Feeding or Eating Disorder Of the 177 eligible subjects, a total of four participants
(OSFED/UFED) in the same cohort. were excluded from the study. Two were excluded for
having medical conditions that were retrospectively
determined to fully account for their disordered eating
Methods behaviors. Two subjects were excluded for having
Participants Binge Eating Disorder and composed too small a distinct
A retrospective chart review was conducted on 177 pa- group for data analysis.
tients admitted to a day program for children and ado-
lescents with EDs between August 4th, 2008 and May
Measures
1st, 2012. This program treats female and male patients,
Demographics, historical and clinical features
ages 7 to 17 years, with EDs and co-morbid psychopath-
Data collected at intake included age, gender, and ethni-
ology. The majority of patients in the program have re-
city. Historical information included past history of ED
strictive EDs, based mostly on the younger average age.
and/or other mental health treatment, other medical disor-
However, patients with purging disorders are treated as
ders and consultations by other medical specialists, pres-
well. While we treat some patients with sensory features
ence of weight loss, percentage of body weight lost, length
related to food, who may or may not also have an autism
of illness, use of nutritional supplements, presence of pur-
spectrum disorder diagnosis, it is important to clarify
ging behaviors, excessive exercise, history of food allergies,
that patients with longstanding feeding issues and aut-
fears of choking and/or vomiting, and sensory issues re-
ism are not typically admitted to our program, and are
lated to food. This information was gathered from the ini-
usually managed in the Feeding Disorders Program at
tial evaluations by the adolescent medicine physician, the
our institution.
psychiatrist, and the psychologist or clinical social worker.
Initial ED and co-morbid psychiatric diagnoses were
made upon admission to the program based on a com-
prehensive diagnostic psychiatric evaluation, by both a Anthropometrics
trained child and adolescent psychiatrist and either an Weight and height were measured by trained staff at
experienced clinical psychologist or a licensed social initial presentation. Gowned weights were obtained on a
worker/clinical psychiatric specialist, using DSM-IV-TR hospital-grade SECA digital scale and recorded to the
criteria. Some of the co-morbid diagnoses were based on nearest tenth of a kg. Heights were measured in bare
history conveyed by the parent to the health care provider. feet using a fixed stadiometer with a right angle head-
DSM-5 ED diagnoses were determined retrospectively and piece and recorded to the nearest tenth of a cm. BMI
agreed upon together through careful discussion by two of was calculated using the standard formula (kg/m2) and
the psychiatric specialists and an adolescent medicine the % Median Body Weight (%MBW) was determined
physician, all of whom were personally involved with the based on the 50th percentile BMI-for-age.
cases, using a checklist based on the proposed DSM-5
diagnostic criteria, which were almost identical to the Psychometric measures
published criteria. Therefore, these diagnoses were not The Children’s Eating Attitudes Test (ChEAT) [17] The
made in a blinded fashion. ChEAT is a 26-item scale assessing attitudes and behaviors
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Figure 1 Total and subscale ChEAT scores by DSM-5 Diagnosis. ChEAT = Children’s Eating Attitudes Test. All differences between groups
significant at p < 0.0001 except Oral Control = N.S.
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by their peers because of their low weight, which may found to be 5% [16]. There is no mention of age range
have led to body image concerns, although of a different in that study, only that the patients were adolescent
nature than typically seen in AN and BN. ED patients assessed in a pediatric tertiary care hospital
There was a significantly higher comorbidity of anxiety program. Our study included children and adolescents
disorders in patients with ARFID (72%) than the other between 7 and 17 years, which may have been a slightly
ED groups (31%), as determined by clinician diagnosis lower range than the Canadian study; this might also
(p < 0.0001). Furthermore, this was supported by paren- justify the higher prevalence of ARFID found in our
tal report on the CBCL (p =0.005). However, there were cohort. Another possible explanation for the discrepancy
no significant differences between groups on the total in prevalence rates across studies is that younger pa-
RCMAS score. Autism spectrum disorder (p = 0.001), tients with atypical EDs, like ARFID, may be increasingly
learning disorders (p < 0.0001), and cognitive impair- referred to adolescent medicine ED programs in more
ment (p < 0.0001) were also seen more frequently in the recent years, as there has been greater recognition of
patients with ARFID, based on past history reported at these presentations as true EDs. The Canadian study
initial assessment (Table 2). On the CBCL, children with reviewed records starting in 2000 and it would be inter-
ARFID had significantly more social problems (p = 0.001) esting to know whether the prevalence increased annu-
and attention problems (p < 0.0001) than those with AN. ally over the 11 years. In our experience, referrals from
There was a lower comorbidity of depression diagnosed in primary care providers tend to generate more referrals
children with ARFID (23%) than the other EDs (57%) once they are successfully managed. Lastly, the higher
(p < 0.0001), and total CDI scores were lower in this group prevalence in our cohort may reflect the fact that many
as well (54.4 vs. 60.0, p = 0.05). Additionally, children with children and adolescents with ARFID present acutely
ARFID were found to have significantly lower scores on and significantly malnourished, requiring a higher level
the CDI subscales Negative Mood (p =0.02) and Negative of care, such as day treatment.
Self Esteem (p < 0.0001). There were no significant differ- Similar to the multicenter and Canadian studies [15,16],
ences between the groups on the Interpersonal Problems, our results demonstrate that there are significant demo-
Ineffectiveness, or Anhedonia subscales, however. graphic and diagnostic characteristics that differentiate
A smaller percentage of children with ARFID (35%) children with ARFID from those with other EDs. First,
sought outpatient psychotherapy before coming to the while female patients remain the majority, there was a
program, compared to patients in the other ED groups higher preponderance of male patients in the ARFID
(AN = 60.22%, EDNOS = 75%, BN = 80%; p = 0.002). How- group than in the other ED groups. Children and adoles-
ever, there were no differences in the past history of cents with ARFID were more likely to present at a youn-
higher levels of psychiatric care, e.g. inpatient, residential, ger age with significant weight loss or failure to gain
or day treatment. In contrast, more children with ARFID appropriate weight, were more dependent on oral or
(46.2%) had seen other medical specialists for consultation enteral nutritional supplementation, and had significantly
(e.g. gastroenterology, endocrinology) before coming to more fears of choking and/or vomiting, and texture and/
program than those with other EDs (26.1%), although this or sensitivity issues regarding food. These findings are
did not reach statistical significance with the Bonferroni consistent with those in studies of early-onset EDs
correction (p = 0.02). [2,22,23], as well as in the recent multicenter study [15],
and many are relevant and important features in making
Discussion the diagnosis of ARFID [24].
This study adds to the literature on ARFID by compar- Based on DSM-5 criteria, a patient cannot have body
ing a cohort of children and adolescents undergoing day image distortion and be diagnosed with ARFID. How-
treatment for EDs, including patients with this “new” ever, our data revealed that 21% of patients diagnosed
diagnosis. Notably, almost a quarter of our patients were with ARFID had body preoccupation with somatic
diagnosed with ARFID, which illustrates the significant concerns. It is important to reiterate that none of the
prevalence of this disorder amongst children and adoles- patients with ARFID had been diagnosed with AN using
cents requiring an intensive level of ED treatment in a DSM-IV criteria, which underscores the absence of true
tertiary care setting. This was a higher prevalence than body image distortion. During evaluation of a young
that found in the multicenter studies [14,15], which patient with possible ARFID versus AN, it is critical to
might be accounted for by the fact that our patients probe about body concerns that need to be distinguished
were encountered over four years in a day treatment set- from body image distortion. For example, if a patient
ting, as opposed to all ED patients presenting for initial has worries about becoming fat, this may have some-
evaluation over a one-year period. The prevalence rate thing to do with events in the family’s medical history,
was in even starker contrast to the 11-year retrospective e.g. an overweight parent or grandparent with a recent
review from Canada, where the prevalence was only myocardial infarction or diabetes diagnosis. Children
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and adolescents are often privy to this information, but health arena, as a trend in our data revealed, although it
may make illogical associations based on their cognitive was not significant.
developmental stage. This knowledge may then trigger There were several strengths to this study, including
restrictive eating behaviors. Thorough history-taking can the large sample size and the use of both clinical and
often elicit this information. standardized psychometric measures for patient assess-
As has been documented in other studies of patients ment. Additionally, the use of multiple informants (pa-
with acute food avoidance without weight/shape con- tients, parents, and clinicians) adds to the validity of the
cerns [2,15,22,25,26], there were no significant differ- findings. Furthermore, experienced clinicians completed
ences in our study between % MBW in patients with all assessments and the adolescent medicine physician
ARFID and AN; however, patients with AN lost a signifi- involved in deciding on the retrospective DSM-5 diagno-
cantly greater percentage of their premorbid body weight. ses was integrally involved in the efforts leading up to
This may be explained by the fact that our patients with the inclusion of ARFID in the DSM-5. As ARFID is still
ARFID, notably those with the acute food refusal seen in a relatively “new” diagnosis, there are no formalized
functional dysphagia, may have presented sooner after the assessment tools available yet. However, instruments will
onset of illness than those with AN. The data may not likely be developed, capturing the clinical features and
fully bear this out due to the heterogeneity of the ARFID diagnostic criteria which will help standardize diagnosis.
category (e.g. more chronic selective eaters vs more There are some available resources to help guide the
acute food refusal), which might balance out the length clinician in evaluation [24,27].
of illness data. Furthermore, young patients may present However, there are several limitations that deserve
relatively early in the course of their illness, based on mention. The retrospective nature of this study, and the
their age alone. fact that diagnoses were made on DSM-5 criteria that
Based on both clinician and parental report, patients had not yet been formalized by the time of its comple-
with ARFID had significantly more anxiety and less de- tion, need to be taken into consideration. However,
pression than patients with other EDs, which is similar as previously mentioned, the published DSM-5 criteria
to findings in the large multicenter study on ARFID were essentially the same as the proposed criteria used
[15]. However, our study is the first of patients with for this study. Careful discussion amongst experienced
ARFID to use standardized measures obtained from par- clinicians very familiar with all of the cases was under-
ents to aid in evaluation. There were no self-reported taken to decide upon the appropriate DSM-5 diagnosis
significant differences found between children with ARFID for each patient; this did not allow for direct assessment
and those with other EDs on the RCMAS or any of its of inter-rater reliability. The absence of blinding of the
subscales, which could be due to the generally high comor- clinicians may have introduced bias to the outcome of
bidity of anxiety symptoms in EDs. Alternatively, younger the study, possibly leading to a higher prevalence of
patients (those more likely to be diagnosed with ARFID) ARFID than previously seen in other studies. Lastly, our
may have had a harder time filling out the questionnaire patients were undergoing day treatment, which im-
than older subjects, perhaps in understanding the ques- plies a certain severity of illness, and may limit the
tions or acknowledging symptoms of anxiety, due to cog- generalizability to patients in other settings, or non-
nitive developmental stage. It is important to clarify that clinical populations. Despite these limitations, this study
ARFID is not simply a type of anxiety disorder, as the provides support for ARFID as a separate diagnostic
severity of the eating disturbance exceeds that which category.
might be seen in an anxiety disorder and necessitates
further clinical attention (see Table 1) [13]. Conclusions
Other than the use of outpatient psychotherapy, there This is the first study to examine patients with the diag-
were no significant differences between the groups in nosis of ARFID in a cohort of patients undergoing day
terms of prior mental health treatment, including hospi- treatment and adds to the limited literature available on
talizations for EDs or other mental health issues, admis- this new diagnosis. The inclusion of psychometric mea-
sions to day treatment programs, intensive outpatient sures from both patients and parents has not been docu-
programs, or residential treatment facilities. It should be mented to date. Children and adolescents with ARFID
taken into consideration, however, that ours is a young, are clearly distinct from those with other EDs and can
relatively treatment-naïve population, and that the rate now be identified and labeled more specifically and ac-
of past mental health admissions would be very different curately. Ideally, this will enable more timely recognition
when looking at an older population of patients. Add- and access to care. The degree of both physical and psy-
itionally, children with ARFID may be more likely seen chosocial dysfunction with which these patients present
as medically ill initially, and the early referrals may tend indicates the need for prompt and appropriate treat-
to gravitate toward the medical as opposed to mental ment. The relatively high prevalence of patients with
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Published: 2 August 2014
doi:10.1186/s40337-014-0021-3
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