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. 2021 Oct 11;175(12):e213861. doi: 10.1001/jamapediatrics.2021.3861

Incidence and Age- and Sex-Specific Differences in the Clinical Presentation of Children and Adolescents With Avoidant Restrictive Food Intake Disorder

Debra K Katzman 1,✉, Wendy Spettigue 2, Holly Agostino 3, Jennifer Couturier 4, Anna Dominic 5, Sheri M Findlay 6, Pei-Yoong Lam 7, Margo Lane 8, Bryan Maguire 9, Karizma Mawjee 10,11, Supriya Parikh 9, Cathleen Steinegger 1, Ellie Vyver 12, Mark L Norris 2
PMCID: PMC8506291  PMID: 34633419

Key Points

Question

What are the incidence and age- and sex-specific differences in clinical presentation of avoidant restrictive food intake disorder (ARFID) among children and adolescents (5-18 years of age) based on the Canadian Paediatric Surveillance Program survey?

Findings

In this cross-sectional study, the incidence of ARFID in this pediatric surveillance study was 2.02 per 100 000 patients. Age- and sex-specific differences were noted for diagnostic criteria, medical characteristics, psychiatric comorbidities, eating behaviors, and hospitalization.

Meaning

This study suggests that age- and sex-specific clinical characteristics better characterize the various ARFID presentations across childhood and adolescence and can inform developmentally appropriate treatments that incorporate lifespan considerations and variability associated with sex differences.

Abstract

Importance

To our knowledge, this is the first pediatric surveillance study of children and adolescents with avoidant restrictive food intake disorder (ARFID).

Objectives

To examine the incidence and age- and sex-specific differences in the clinical presentation of ARFID in children and adolescents in Canada.

Design, Setting, and Participants

In this cross-sectional study, patients with ARFID were identified through the Canadian Paediatric Surveillance Program by surveying 2700 Canadian pediatricians monthly from January 1, 2016, to December 31, 2017.

Main Outcomes and Measures

The incidence of ARFID in Canadian children (5-18 years of age) and age- and sex-specific clinical characteristics at presentation.

Results

In total, 207 children and adolescents (mean [SD] age, 13.1 [3.2] years; 127 [61.4%] female) were included in this study. The incidence of ARFID in children 5 to 18 years of age was 2.02 (95% CI, 1.76-2.31) per 100 000 patients. Older children and adolescents were more likely to endorse eating too little (5-9 years of age: 76.7%; 95% CI, 58%-88.6; 10-14 years of age: 90.9%; 95% CI, 84.6%-94.8%; 15-18 years of age: 95.6%; 95% CI, 83.6%-98.9%; P = .02), have a loss of appetite (5-9 years of age: 53.3%; 95% CI, 35.4%-70.4%; 10-14 years of age: 74.2%; 95% CI, 66.0%-81.0%; 15-18 years of age: 80.0%; 95% CI, 65.5%-89.4%; P = .03), be medically compromised (mean body mass index z score: 10-14 vs 5-9 years of age: −1.31; 95% CI, −2.0 to −0.6; 15-18 vs 5-9 years of age: −1.35; 95% CI, −2.2 to −0.5; 15-18 vs 10-14 years of age: −0.04; 95% CI, −0.6 to 0.5; P < .001; mean percentage of treatment goal weight: 10-14 vs 5-9 years of age: −8.6; 95% CI, −14.3 to −2.9; 15-18 vs 5-9 years of age: −9.8; 95% CI, −16.3 to −3.3; 15-18 vs 10-14 years of age: −1.2; 95% CI, −5.8 to 3.4; P < .001; mean heart rate (beats per min): 10-14 vs 5-9 years of age: −10; 95% CI, −21.9 to 1.9; 15-18 vs 5-9 years of age: −19.7; 95% CI, −33.1 to −6.2; 15-18 vs 10-14 years of age: −9.7; 95% CI, −18.7 to −0.7; P = .002), have higher rates of anxiety (5-9 years of age: 26.7%; 95% CI, 13.7-45.4; 10-14 years of age: 52.3%; 95% CI, 43.7%-60.7%; 15-18 years of age: 53.3%; 95% CI, 38.6%-67.5%; P = .03) and depression (5-9 years of age: 0%; 10-14 years of age: 6.8%; 95% CI, 3.6%-12.7%; 15-18 years of age: 26.7%; 95% CI, 15.7%-41.6%; P < .001), and be more likely to be hospitalized (5-9 years of age: 13.3%; 95% CI, 5.0%-31.1%; 10-14 years of age: 41.7%; 95% CI, 33.5%-50.3%; 15-18 years of age: 55.6%; 95% CI, 40.7%-69.5%; P = .001). Younger children were more likely to endorse lack of interest in food (5-9 years of age: 56.7%; 95% CI, 38.4%-73.2%; 10-14 years of age: 75.0%; 95% CI, 66.8%-81.7%; 15-18 years of age: 57.8%; 95% CI, 42.8%-71.4%; P = .03), avoidance of certain foods (5-9 years of age: 90.0%; 95% CI, 72.6%-96.8%; 10-14 years of age: 69.7%; 95% CI, 61.3%-77.0%; 15-18 years of age: 62.2%; 95% CI, 47.2%-75.3%; P = .03), and refusal based on sensory characteristics (5-9 years of age: 66.7%; 95% CI, 47.9%-81.3%; 10-14 years of age: 38.6%; 95% CI, 30.7%-47.3%; 15-18 years of age: 22.2%; 95% CI, 12.3%-36.9%; P < .001). Eating but not enough was more common in girls (75.0%; 95% CI, 64.1%-83.4%) vs boys (68.5%; 95% CI, 59.8%-76.1; P = .04), and boys had a higher rate of refusal based on sensory characteristics (51.2%; 95% CI, 40.2%-62.2%) compared with girls (31.5%; 95% CI, 23.9%-40.2%; P = .007).

Conclusions and Relevance

This study suggests that ARFID is a relatively common eating disorder and is associated with important age- and sex- specific clinical characteristics that may help in early recognition and timely treatment of the presenting symptoms.

This cross-sectional study of Canadian children and adolescents with avoidant restrictive food intake disorder examines incidence and age- and sex-specific differences in clinical presentation.

Introduction

Avoidant restrictive food intake disorder (ARFID) is a diagnosis in the Feeding and Eating Disorders section of the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition) (DSM-5).1 Characteristics of ARFID include significant weight loss, nutritional deficiency, dependence on enteral feeding or nutritional supplements, or marked interference in psychosocial functioning. The DSM-5 provides 3 example presentations of ARFID, which can occur independently or in combination: individuals with lack of interest in food, sensory avoidance of foods, or fear of aversive consequences of eating.1

Earlier studies,2,3,4,5,6,7,8,9,10,11,12 mostly from specialized pediatric eating disorder (ED) programs,2,3,4,5,6,7,8 have provided information about the prevalence of ARFID from a variety of settings. Prevalence estimates in a recent systematic review13 varied substantially from 1.5% to 64.0%. Accurate and in-depth epidemiologic data are key to advancing our understanding of ARFID. To date, we are unaware of any North American study reporting the incidence of ARFID in a community-based sample.

Earlier studies3,4,5,6,14,15,16,17,18,19,20,21,22 provided clinical descriptions of this population. Most are single-case studies, case series, or retrospective medical record reviews that compare the medical and psychological characteristics of children with ARFID with those of children with anorexia nervosa. Compared with children and adolescents with anorexia nervosa, those with ARFID are more likely to be younger4,14,15 and male,4,15,16 have a longer duration of illness,3,4,6,23 and have a concurrent anxiety disorder.3,5,6,15,17,18,19,20,21,22,24 Moreover, various factors associated with food avoidance account for significant variability in clinical presentation.20,25

Although children and adolescents have age- and sex-specific differences in the clinical presentation of an ED,26 to our knowledge, no studies have examined such differences in the clinical presentation of ARFID for this age group. A better understanding of children and adolescents with ARFID could aid in its earlier recognition, development of effective treatment strategies, and reduction of lifelong medical and psychological complications. In the current study, we used the Canadian Paediatric Surveillance Program (CPSP) method to investigate the incidence and age- and sex-specific differences in the clinical presentation of ARFID in children and adolescents 5 to 18 years of age.

Methods

Patient Ascertainment

Patients with ARFID were identified from January 1, 2016, to December 31, 2017, through the CPSP in which 2700 Canadian pediatricians participate. Pediatricians were surveyed monthly and asked to report any new cases that met the criteria for ARFID.

Patient Definition

Patients with ARFID were defined as any child or adolescent 5 to 18 years of age who was seen in the previous month, who met the DSM-5 diagnostic criteria for ARFID, and who presented for the first time to the practice of a case-identifying pediatrician (CIP).

Protocol

Once a CIP identified a patient with ARFID, we mailed a secondary detailed questionnaire to establish the presence of ARFID criteria; associated eating behaviors; medical, psychiatric, family, and social history; physical examination findings; and case management.27 Completed questionnaires were independently reviewed (D.K.K. and M.L.N.) to confirm the presence or absence of an ARFID diagnosis. A third-party rater (W.S.) was available to resolve any disagreements.

Public health surveillance does not require patient consent. Data were collected under the legal authority of the Department of Health Act28 and the Public Health Agency of Canada Act.29 The Research Ethics Board at SickKids, Toronto, Ontario, Canada, and the Children’s Hospital of Eastern Ontario, Ottawa, Ontario, approved this study. All data were deidentified. Data analysis was performed from January 23, 2019, to February 6, 2021. This study followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.

Statistical Analysis

Data were analyzed with R, version 4.0.3 statistical software (R Foundation for Statistical Computing),30 and demographic characteristics were summarized descriptively. Given the known clinical age-related differences in mental health,31,32 participants were classified into 3 age groups: 5 to 9 years, 10 to 14 years, and 15 to 18 years. For continuous outcomes, analysis of variance was used to evaluate differences among age categories, duration of symptoms (DOS; time from the onset of symptoms to the date of CIP diagnosis), mean percentage of treatment goal weight (%TGW),33 body mass index (BMI) z score, and heart rate (HR); 2-tailed, unpaired t tests were used to evaluate differences between the sexes, girls who were vs were not menarcheal, and hospitalizations. A 2-way analysis of variance that included an interaction between age and sex was used to evaluate the effect of age and sex on weight and weight loss. The differences in proportions among categorical outcomes across age categories and sex were evaluated with χ2 tests. A 2-sided P < .05 was considered to be statistically significant. The analysis was performed from January 23, 2019, to February 6, 2021.

Results

A total of 239 potential patients with ARFID with completed detailed questionnaires were reported. Thirty-two (13.4%) of these patients were deemed ineligible: 11 patients had an identifiable medical or mental disorder that could better explain the clinical presentation, 16 had evidence of body image disturbance, and 5 did not meet the inclusion criteria. In total, 207 children and adolescents (mean [SD] age, 13.1 [3.2] years; 127 [61.4%] female) were included in the study.

Incidence

As reported by CIPs, the overall incidence of ARFID in children and adolescents 5 to 18 years of age in Canada was 2.02 (95% CI, 1.76-2.31) per 100 000 patients, with incidences of 2.54 (95% CI, 2.13-3.01) in girls and 1.52 (95% CI, 1.21-1.88) in boys. The incidence of ARFID reported by age and sex is presented in Table 1; the highest incidence was among those 10 to 14 years of age for both sexes.

Table 1. Incidence of Avoidant Restrictive Food Intake Disorder in Children and Adolescents by Age and Sex.

Age group and sex No. of patients Mean (SD) age, y Incidence per 100 000 patients (95% CI)
5-9 y
Male 16 6.9 (1.7) 0.78 (0.46-1.23)
Female 14 7.5 (1.5) 0.71 (0.41-1.16)
Total 30 7.2 (1.6) 0.74 (0.51-1.05)
10-14 y
Male 45 13.4 (2.0) 2.28 (1.69-3.03)
Female 87 13.4 (2.1) 4.64 (3.74-5.69)
Total 132 13.4 (2.1) 3.43 (2.88-4.06)
15-18 y
Male 19 16.1 (0.5) 1.56 (0.97-2.38)
Female 26 15.9 (0.6) 2.24 (1.50-3.24)
Total 45 16.0 (0.6) 1.89 (1.40-2.51)
All age groups (9-18 y)
Male 80 12.1 (3.6) 1.52 (1.21-1.88)
Female 127 12.5 (2.9) 2.54 (2.13-3.01)
Total 207 13.1 (3.2) 2.02 (1.76-2.31)
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Demographic Characteristics

The demographic characteristics of the patients are given in Table 1. Of the total 207 children and adolescents with ARFID identified, 26 (12.6%) were Arab, Black, Chinese, Filipino, Latin American, Southeast Asian, West Asian, or multiethnic; 5 (2.4%) were First Nations or Inuit; 13 (6.3%) were South Asian; 146 (70.5%) were White; 3 (1.4%) were other (as denoted in the questionnaire); and 14 (6.6%) were unknown. A total of 132 of 207 patients (63.8%) were from Central Canada, 68 (32.9%) from Western Canada, and 7 (3.4%) from Atlantic Canada. The data are representative of the population distribution in Canada in the 2018 census. The overall ratio of female to male individuals was 3:2, 7:8 for those 5 to 9 years of age, 2:1 for those 10 to 14 years of age, and 1.4:1.0 for those 15 to 18 years of age. The mean (SD) overall DOS at the time of presentation (n = 196 patients) was 35.2 (40.0) months (range, 0-164 months), with no significant difference across age groups (5-9 years of age: 38.3 months; 10-14 years of age: 37.9 months; 15-18 years of age: 25.8 months; P = .19) or sex (male-female ratio, 42.2:30.8; P = .07).

DSM-5 Criteria

The CIPs used all DSM-5 diagnostic criteria to identify children and adolescents with ARFID (Table 2). Criteria A1 (weight and growth issues) (186 [89.9%]) and A4 (interference with psychosocial functioning) (139 [67.1%]) were the most common DSM-5 diagnostic criteria cited. We deconstructed criterion A1 into criteria A1a (significant weight loss), A1b (failure of weight gain), and A1c (faltering growth). In general, older children were more likely to have criterion A1 (5-9 years of age: 66.7%; 95% CI, 47.9%-81.3%; 10-14 years of age: 91.7%; 95% CI, 85.5%-95.5%; 15-18 years of age: 100%; 95% CI, 93.3%-100%; P < .001). Criteria A1a (5-9 years of age: 30%; 95% CI, 16.2%-48.8%; 10-14 years of age: 54.6%; 95% CI, 45.9%-62.9%; 15-18 years of age: 82.2%; 95% CI, 68.0%-91.0%; P < .001) and A1c (5-9 years of age: 26.7%; 95% CI, 13.7%-45.4%; 10-14 years of age: 38.6%; 95% CI, 30.7%-47.3%; 15-18 years of age: 13.3%; 6.0%-26.9%; P = .006) were more common among older children; the highest prevalence of faltering growth was among children 10 to 14 years of age. The findings for criterion A3 (dependence on enteral feeding or oral nutritional supplements) were not statistically significant (5-9 years of age: 46.7%; 95% CI, 29.6%-64.6%; 10-14 years of age: 32.6%; 95% CI, 25.1%-41.1%; 15-18 years of age: 20%; 95% CI, 10.6%-34.5%; P = .05) across the age groups and was more common among younger children. Girls were significantly more likely to meet the criterion for A1 (male vs female proportion: 82.5% [95% CI, 72.3%-89.5%] vs 94.5% [95% CI, 88.8%-97.4%]; P = .01). No significant differences were found between the sexes for criteria A1a through A1c, A2 (nutritional deficiency), A3, and A4. Of the 207 children and adolescents with ARFID, 121 (58.5%) met more than 1 diagnostic criterion. The most frequently noted combination of criteria was A1 and A4 (46 [22.2%]) followed by A1, A2, and A4 (28 [13.5%]); A1, A2, A3, and A4 (24 [11.6%]); and A1, A3, and A4 (23 [11.1%]).

Table 2. Frequencies of DSM-5 Diagnostic Criteria for Avoidant Restrictive Food Intake Disorder Across Age and Sex.

Criterion No. (%) of patients by sex per age category [95% CI] P value by sex
5-9 y (n = 30 [14 female and 16 male patients]) 10-14 y (n = 131 [87 female and 45 male patients]) 15-18 y (n = 45 [26 female and 19 male patients]) Total (N = 207 [127 female and 80 male patients])
Significant weight loss (or failure to achieve expected weight gain or faltering growth in children)
Male 7 (43.8) [21.6-68.7] 40 (88.9) [77.5-95.4] 19 (100) [84.2-100] 66 (82.5) [72.3-89.5] .01
Female 13 (92.9) [60.7-99.1] 81 (93.1) [85.3-96.9] 26 (100) [88.5-100] 120 (94.5) [88.8-97.4]
Total 20 (66.7) [47.9-81.3] 121 (91.7) [85.5-95.5] 45 (100) [93.3-100] 186 (89.9) [84.9-93.3]
P value by age <.001 NA NA
Significant weight loss
Male 1 (6.3) [0.8-35.8] 24 (53.3) [38.5-67.6] 16 (84.2) [59.6-95.1] 41 (51.2) [40.2-62.2] .24
Female 8 (57.1) [30.5-80.2] 48 (55.2) [44.5-65.4] 21 (80.8) [60.6-92] 77 (60.6) [51.8-68.8]
Total 9 (30.0) [16.2-48.8] 72 (54.6) [45.9-62.9] 37 (82.2) [68.0-91.0] 118 (57.0) [50.1-63.6]
P value by age <.001 NA NA
Failure to achieve expected weight gain
Male 6 (37.5) [17.2-63.4] 25 (55.6) [40.6-69.6] 11 (57.9) [34.7-78.1] 42 (52.5) [41.4-63.4] .19
Female 10 (71.4) [42.6-89.4] 57 (65.5) [54.8-74.9] 12 (46.2) [27.9-65.5] 79 (62.2) [53.4-70.3]
Total 16 (53.3) [35.4-70.4] 82 (62.1) [53.5-70.1] 23 (51.1) [36.6-65.5] 121 (58.5) [51.6-65]
P value by age .33 NA NA
Faltering growth
Male 3 (18.8) [5.8-46.3] 18 (40) [26.5-55.2] 4 (21.1) [7.8-45.7] 25 (31.2) [21.9-42.4] >.99
Female 5 (35.7) [15.0-63.60 33 (37.9) [28.2-48.7] 2 (7.7) [1.9-26.9] 40 (31.5) [23.9-40.2]
Total 8 (26.7) [13.7-45.4] 51 (38.6) [30.7-47.3] 6 (13.3) [6.0-26.9] 65 (31.0)
P value by age .006 NA NA
Significant nutritional deficiency
Male 4 (25.0) [9.2-52.2] 14 (31.1) [19.1-46.3] 7 (36.8) [18.1-60.7] 25 (31.2) [21.9-42.4] .90
Female 6 (42.9) [19.8-69.5] 23 (26.4) [18.1-36.8] 13 (50.0) [31.2-68.8] 42 (33.1) [25.4-41.8]
Total 10 (33.3) [18.7-52.1] 37 (28.0) [21.0-36.4] 20 (44.4) [30.5-59.3] 67 (32.4) [26.3-39.1]
P value by age .13 NA NA
Dependence on enteral feeding or oral nutritional supplements
Male 10 (62.5) [36.6-82.8] 18 (40.0) [26.5-55.2] 1 (5.3) [0.7-31.2] 29 (36.2) [26.3-47.5] .36
Female 4 (28.6) [10.6-57.4] 25 (28.7) [20.1-39.3] 8 (30.8) [15.9-51.2] 37 (29.1) [21.8-37.7]
Total 14 (46.7) [29.6-64.6] 43 (32.6) [25.1-41.1] 9 (20.0) [10.6-34.5] 66 (31.9) [25.8-38.6]
P value by age .05 NA NA
Marked interference with psychosocial functioning
Male 12 (75.0) [47.8-90.8] 30 (66.7) [51.4-79.1] 12 (63.2) [39.3-81.9] 54 (67.5) [56.3-77] >.99
Female 7 (50.0) [25.0-75.0] 58 (66.7) [56.0-75.9] 20 (76.9) [56.6-89.5] 85 (66.9) [58.2-74.6]
Total 19 (63.3) [44.7-78.7] 88 (66.7) [58.1-74.2] 32 (71.1) [56.1-82.6] 139 (67.1) [60.4-73.3]
P value by age .77 NA NA
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Abbreviations: DSM-5, Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition); NA, not applicable.

Medical Findings

Overall, 159 of 167 children and adolescents (95.2%) were at a weight that the CIPs considered too low. Table 3 presents summary statistics for the medical findings. A significant difference was observed across the age groups: older children had a lower mean BMI z score (10-14 vs 5-9 years of age: −1.31; 95% CI, −2.0 to −0.6; 15-18 vs 5-9 years of age: −1.35; 95% CI, −2.2 to −0.5; 15-18 vs 10-14 years of age: −0.04; 95% CI, −0.6 to 0.5; P < .001), %TGW (10-14 vs 5-9 years of age: −8.6; 95% CI, −14.3 to −2.9; 15-18 vs 5-9 years of age: −9.8; 95% CI, −16.3 to −3.3; 15-18 vs 10-14 years of age: −1.2; 95% CI, −5.8 to 3.4; P < .001), and mean HR (beats per minute) (10-14 vs 5-9 years of age: −10; 95% CI, −21.9 to 1.9; 15-18 vs 5-9 years of age: −19.7; 95% CI, −33.1 to −6.2; 15-18 vs 10-14 years of age: −9.7; 95% CI, −18.7 to −0.7; P = .002) than younger children. Older adolescents had a higher rate of bradycardia (5-9 years of age: −0%; 10-14 years of age: 14.3%; 95% CI, 9.0%-21.9%; 15-18 years of age: 35.0%; 95% CI, 21.7%-51.1%; P = .001). No differences were noted between the sexes for any medical findings. However, the interaction between the associations of sex and age with mean weight loss (n = 99) was significant: mean weight loss in boys was greater as they got older (difference in weight between boys and girls: 10-14 years of age: 2.13 kg; 95% CI, −1.12 to 5.47 kg; 15-18 years of age: 9.00 kg; 95% CI, 3.53-14.47 kg; P = .03).

Table 3. Medical Findings Across Age and Sex in Children and Adolescents With Avoidant Restrictive Food Intake Disorder.

Finding Finding by age group, mean (SD) [sample size] Differences between age groups (95% CI) Sex differences
5-9 y 10-14 y 15-18 y 10-14 y vs 5-9 y 15-18 y vs 5-9 y 15-18 y vs 10-14 y P value Sex differences (95% CI) P value
Weight, kg
Male 23.0 (6.00) [16] 38.6 (11.4) [43] 52.4 (11.1) [18] 13.9 (9.5 to 18.4) 23.9 (18.7 to 29.1) 9.9 (6.1 to 13.8) <.001 2.1 (–1.5 to 5.8) .25
Female 23.4 (5.5) [14] 36.5 (8.7) [86] 43.4 (7.4) [26]
Total 23.2 (5.7) [30] 37.2 (9.7) [129] 47.1 (10.0) [44]
Weight loss, kg
Male 0 9.3 (6.6) [19] 15.8 (7.4) [11] 3.3 (–1.6 to 8.2) 6.5 (1.4 to 117) 3.2 (0.3 to 6.1) .004 4.9 (1.9 to 7.8) <.001
Female 4.3 (2.3) [8] 6.8 (4.0) [42] 7.9 (4.30) [19]
Total 4.3 (2.3) [8] 7.6 (5.1) [61] 10.8 (6.7) [30]
BMI z score
Male –0.37 (1.0) [14] –1.7 (1.8) [43] –1.8 (1.6) [17] –1.3 (–2 to –0.6) –1.4 (–2.2 to –0.5) –0.04 (–0.6 to 0.5) <.001 0.3 (–0.2 to 0.7) .22
Female –0.65 (0.8) [11] –1.9 (1.2) [86] –1.9 (1.1) [24]
Total –0.50 (0.90) [25] –1.8 (1.4) [129] –1.9 (1.3) [41]
%TGW
Male 97.4 [13] 84.7 [36] 82.4 [18] –8.6 (–14.3 to –2.9) –9.8 (–16.3 to –3.3) –1.2 (–5.8 to 3.4) <.001 2.9 (–0.8 to 6.5) .12
Female 86.7 [11] 83.5 [76] 83.0 [23]
Total 92.5 [24] 83.9 [112] 82.8 [41]
HR, beats per min
Male 90.7 (12.6) [9] 77.4 (23.9) [40] 65.3 (19.4) [16] –10 (–21.9 to 1.9) –19.7 (–33.1 to –6.2) –9.7 (–18.7 to –0.7) .002 –2.4 (–9.2 to 4.3) .48
Female 87.4 (10.1) [11] 79.6 (20.5) [79] 71.8 (23) [24]
Total 88.9 (11.1) [20] 78.9 (21.7) [119] 69.2 (21.6) [40]
Bradycardiaa
Male 0 5 7 0 12.5 (5.2 to 27.3) 43.8 (21.6 to 68.8) .001 18.5 (10.6 to 30.1) .92
Female 0 12 7 0 15.2 (8.7 to 25.1) 29.2 (14.2 to 50.5) 16.7 (10.8 to 24.8)
Total 0 17 14 0 14.3 (9.0 to 21.9) 35.0 (21.7 to 51.1)
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Abbreviations: BMI, body mass index; HR, heart rate; %TGW, percentage of treatment goal weight.

a

For bradycardia, data in the differences between age groups and sex differences columns are proportions.

A total of 93 children and adolescents (44.9%) had 1 or more medical signs or symptoms reported: constipation was the most common (44 [47.3%]), followed by muscle wasting (34 [36.6%]), dizziness (33 [35.5%]), dehydration (24 [25.8%]), syncope (9 [9.7%]), hypotension (9 [9.7%]), arrhythmias (5 [5.4%]), and hypothermia (4 [4.3%]).

Menstrual status was documented in 118 of the 127 identified girls (92.9%). A total of 54 of 118 girls (45.8%) had reached menarche, of whom only 23 (42.6%) were menstruating regularly. The mean weight (44.9 vs 41.1 kg; P = .11), BMI z score (−1.64 vs −2.13; P = .19), and participation in exercise (26.1% vs 23.0%; P > .99) of girls who were menstruating regularly compared with those with secondary amenorrhea were not significantly different. However, the difference in mean HR (81.2 vs 69.1 beats beats per min) in menstruating girls compared with those with secondary amenorrhea was significant; those not menstruating had a lower HR (estimated difference, 12.1; 95% CI, 0.5-23.65; P = .04).

Eating Behavior Characteristics and Other Health-Related Symptoms

Feeding and eating behaviors and other health-related symptoms are summarized in Table 4. A significant difference in the rate of eating but not enough (5-9 years of age: 76.7%; 95% CI, 58.0%-88.6%; 10-14 years of age: 90.9%; 95% CI, 84.6%-94.8%; 15-18 years of age: 95.6%; 95% CI, 83.6%-98.9%; P = .02) and loss of appetite (5-9 years of age: 53.3%; 35.4%-70.4%; 10-14 years of age: 74.2%; 95% CI, 66.0%-81.0%; 15-18 years of age: 80.0%; 65.5%-89.4%; P = .03) was noted across age groups: the rate among older patients was higher. In contrast, the rate of apparent lack of interest in food (5-9 years of age: 56.7%; 95% CI, 38.4%-73.2%; 10-14 years of age: 75.0%; 95% CI, 66.8%-81.7%; 15-18 years of age: 57.8%; 95% CI, 42.8%-71.4%; P = .03), avoidance of certain foods (5-9 years of age: 90%; 95% CI, 72.6%-96.8%; 10-14 years of age: 69.7%; 61.3%-77.0%; 15-18 years of age: 62.2%; 95% CI, 47.2%-75.3%; P = .03), and refusal based on sensory characteristics (5-9 years of age: 66.7%; 95% CI, 47.9%-81.3%; 10-14 years of age: 38.6%; 95% CI, 30.7%-47.3%; 15-18 years of age: 22.2%; 95% CI, 12.3%-36.9%; P < .001) was higher among younger children. The difference in the rate of eating but not enough in boys (75.0%; 95% CI, 64.1%-83.4%) vs girls (68.5%; 95% CI, 59.8%-76.1%; P = .04) was higher among girls, whereas the rate of refusal to eat because of sensory characteristics of foods was higher among boys (51.2%; 95% CI, 40.2%-62.2%) vs girls (31.5%; 95% CI, 23.9%-40.2%; P = .007).

Table 4. Feeding and Eating Characteristics and Other Health-Related Symptoms Among Children and Adolescents With Avoidant Restrictive Food Intake Disorder.

Characteristic No. (%) of children and adolescents by age group [95% CI] P value
5-9 y (n = 30) 10-14 y (n = 132) 15-18 y (n = 45) Total (N = 207) Age Sex
Sex
Male 16 (53.3) 45 (33.3) 19 (42.2) 80 (38.6)
Female 14 (46.7) 87 (65.9) 26 (57.8) 127 (61.4)
Food avoidance
Male 13 (81.2) [53.7-94.2] 38 (84.4) [70.3-92.6] 14 (73.7) [49.1-89.0] 65 (81.2) [70.9-88.5] .81 .60
Female 12 (85.7) [55.6-96.6] 71 (81.6) [71.9-88.5] 25 (96.2) [76.1-99.5] 108 (85.0) [77.6-90.3]
Total 25 (83.3) [65.2-93.0] 109 (82.6) [75.1-88.2] 39 (86.7) [73.1-94.0] 173 (83.6) [77.8-88.1]
Eating but not eating enough
Male 9 (56.2) [31.3-78.4] 41 (91.1) [78.1-96.7] 17 (89.5) [64.8-97.5] 67 (83.8) [73.7-90.4] .02 .04
Female 14 (100) [78.6-100] 79 (90.8) [82.5-95.4] 26 (100) [88.5-100] 119 (93.7) [87.8-96.8]
Total 23 (76.7) [58.0-88.6] 120 (90.9) [84.6-94.8] 43 (95.6) [83.6-98.9] 186 (89.9) [84.9-93.3]
Not initiating eating or seeking out food as expected
Male 8 (50) [26.3-73.7] 35 (77.8) [63.0-87.8] 14 (73.7) [49.1-89.0] 57 (71.2) [60.2-80.3] .31 .69
Female 11 (78.6) [49.0-93.3] 66 (75.9) [65.6-83.8] 18 (69.2) [48.8-84.1] 95 (74.8) [66.4-81.7]
Total 19 (63.3) [44.7-78.7] 101 (76.5) [68.5-83.0] 32 (71.1) [56.1-82.6] 152 (73.4) [66.9-79.0]
Loss of appetite; little or no desire to eat
Male 7 (43.8) [21.6-68.7] 32 (71.1) [55.9-82.7] 17 (89.5) [64.8-97.5] 56 (70.0) [58.9-79.2] .03 .64
Female 9 (64.3) [36.4-85.0] 66 (75.9) [65.6-83.8] 19 (73.1) [52.7-86.9] 94 (74.0) [65.6-81.0]
Total 16 (53.3) [35.4-70.4] 98 (74.2) [66.0-81.0] 36 (80.0) [65.5-89.4] 150 (72.5) [65.9-78.2]
Apparent lack of interest in eating
Male 7 (43.8) [21.6-68.7] 37 (82.2) [67.8-91.0] 14 (73.7) [49.1-89.0] 58 (72.5) [61.5-81.3] .03 .42
Female 10 (71.4) [42.6-89.4] 62 (71.3) [60.7-79.9] 12 (46.2) [27.9-65.5] 84 (66.1) [57.4-73.9]
Total 17 (56.7) [38.4-73.2] 99 (75.0) [66.8-81.7] 26 (57.8) [42.8-71.4] 142 (68.6) [61.9-74.6]
Eating but avoiding certain foods
Male 14 (87.5) [59.7-97.1] 34 (75.6) [60.6-86.1] 12 (63.2) [39.3-81.9] 60 (75.0) [64.1-83.4] .03 .40
Female 13 (92.9) [60.7-99.1] 58 (66.7) [56.0-75.9] 16 (61.5) [41.5-78.3] 87 (68.5) [59.8-76.1]
Total 27 (90) [72.6-96.8] 92 (69.7) [61.3-77.0] 28 (62.2) [47.2-75.3] 147 (71.0) [64.4-76.8]
Refusal to eat based on sensory characteristics of food
Male 11 (68.8) [42.1-87.0] 26 (57.8) [42.7-71.5] 4 (21.1) [7.8-45.7] 41 (51.2) [40.2-62.2] <.001 .007
Female 9 (64.3) [36.4-85.0] 25 (28.7) [20.1-39.3] 6 (23.1) [10.5-43.4] 40 (31.5) [23.9-40.2]
Total 20 (66.7) [47.9-81.3] 51 (38.6) [30.7-47.3] 10 (22.2) [12.3-36.9] 81 (39.1) [32.7-46.0]
Swallowing difficulties
Male 3 (18.8) [5.8-46.3] 5 (11.1) [4.6-24.5] 4 (21.1) [7.8-45.7] 12 (15.0) [8.6-24.8] .90 >.99
Female 2 (14.3) [3.4-44.4] 13 (14.9) [8.8-24.2] 3 (11.5) [3.6-31] 18 (14.2) [9.1-21.5]
Total 5 (16.7) [7.0-34.8] 18 (13.6) [8.7-20.7] 7 (15.6) [7.5-29.5] 30 (14.5) [10.3-20.0]
Presence of at least 1 somatic concern
Male 5 (31.2) [13.0-57.9] 18 (40) [26.5-55.2] 11 (57.9) [34.7-78.1] 34 (42.5) [32.0-53.8] .06 .05
Female 6 (42.9) [19.8-69.5[ 49 (56.3) [45.6-66.5] 18 (69.2) [48.8-84.1] 73 (57.5) [48.6-65.9]
Total 11 (36.7) [21.3-55.3] 67 (50.8) [42.2-59.3] 29 (64.4) [49.3-77.1] 107 (51.7) [44.8-58.5]
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Abbreviation: NA, not applicable.

Mental Health

The CIPs reported that 101 of the 207 identified children and adolescents with ARFID (48.8%) (34 of 80 boys [42.5%] and 67 of 127 girls [52.8%]) had comorbid anxiety. Twenty-one of the 207 children and adolescents (10.1%) had depression (9 of 80 boys [11.3%] vs 12 of 127 girls [9.5%]). Although the rate of depression was not significantly different between the sexes, the rate of depression (5-9 years of age: 0%; 10-14 years of age: 6.8%; 95% CI, 3.6%-12.7%; 15-18 years of age: 26.7%; 95% CI, 15.7%-41.6%; P < .001) and anxiety (5-9 years of age: 26.7%; 95% CI, 13.7%-45.4%; 10-14 years of age: 52.3%; 95% CI, 43.7%-60.7%; 15-18 years of age: 53.3%; 95% CI, 38.6%-67.5%; P = .03) was significantly different across age groups: rates among older patients were higher. In addition, 31 of the 207 children and adolescents (15.0%) had attention-deficit/hyperactivity disorder, 17 (8.2%) had obsessive-compulsive disorder, and 17 (8.2%) had autism spectrum disorder. The CIPs documented 34 of 207 children and adolescents (16.4%) with a history of bullying, which was highest among girls 10 to 18 years of age (22 [10.6%]). In addition, CIPs noted that 15 patients (7.2%) experienced sexual, physical, or emotional abuse.

Patient Management

Hospitalization

Table 5 compares the clinical characteristics of children and adolescents who were hospitalized with those who were not hospitalized. A total of 84 of 207 children and adolescents (40.6%) were hospitalized: 65 (31.4%) were medical admissions, 10 (4.8%) were psychiatric admissions, and 9 (4.3%) were combined medical and psychiatric admissions. Thirteen individuals (6.3%) participated in a day hospital program. Thirty-six individuals (17.4%) had a previous medical admission, and 3 (1.4%) had a previous psychiatric admission. Age groups differed significantly in their hospitalizations (5-9 years of age: 13.3%; 95% CI, 5.0%-31.1%; 10-14 years of age: 41.7%; 95% CI, 33.5%-50.3%; 15-18 years of age: 55.6%; 95% CI, 40.7%-69.5%; P = .001) and presence of concurrent anxiety and depression (5-9 years of age: 0%; 10-14 years of age: 6.8%; 95% CI, 3.6%-12.7%; 15-18 years of age: 22.2%; 95% CI, 12.3%-36.9%; P = .002). Those hospitalized were more likely to have a lower %TGW (nonhospitalized vs hospitalized: 6.7%; 95% CI, 3.5%-10.0%; P < .001) and BMI z score (nonhospitalized vs hospitalized: 0.5; 95% CI, 0.1%-0.9%; P = .01). Finally, hospitalized vs nonhospitalized children and adolescents were more likely to exhibit diagnostic criteria A2 (41.7% [95% CI, 31.5%-52.6%] vs 26.0% [95% CI, 19.0%-34.6%] P = .03), A3 (45.2% [95% CI, 34.8%-56.1%] vs 22.8% [95% CI, 16.1%-31.1%]; P = .001), or A4 (77.4% [95% CI, 67.1%-85.2%] vs 60.2% [95% CI, 51.2%-68.5%]; P = .02).

Table 5. Comparison of Clinical Characteristics Between Children and Adolescents Who Were Hospitalized vs Not Hospitalized.
Age and sex No. of children and adolescents (N = 207) No. (%) of hospitalized children and adolescents %TGW, mean (SD) BMI z score, mean (SD) DOS, mean (SD), mo
Hospitalized Nonhospitalized Hospitalized Nonhospitalized Hospitalized Nonhospitalized
5-9 y
Male 16 1 (6.3) NA 97.4 (15.2) 0.38 (NA) –0.43 (1.10) 1.0 (NA) 55.6 (24.9)
Female 14 3 (21.4) 89.9 (10.3) 85.5 (11.6) –0.88 (0.63) –0.60 (0.91) 16.0 (25.2) 24.1 (26.5)
10-14 y
Male 45 17 (37.8) 76.3 (11.3) 88.9 (9.1) –2.31 (1.50) –1.38 (1.90) 35.1 (49.0) 53.7 (35.2)
Female 87 38 (43.7) 81.8 (10.4) 84.9 (8.0) –1.99 (1.30) –1.77 (1.20) 34.1 (41.3) 32.4 (37.0)
15-18 y
Male 19 10 (52.6) 79.9 (12.2) 85.4 (7.5) –1.65 (1.90) –1.99 (1.20) 21.9 (11.6) 23.2 (42.5)
Female 26 15 (57.7) 80.8 (9.7) 85.8 (11.5) –2.06 (1.10) –1.65 (1.04) 20.7 (25.0) 38.7 (40.1)
Total 207 84 (40.6) 80.8 (10.7) 87.5 (10.5) –1.96 (1.40) –1.44 (1.40) 29.1 (37.0) 39.4 (37.0)
Difference between nonhospitalized vs hospitalized individuals, mean (95% CI) NA NA 6.7 (3.5 to 10) 0.5 (0.1 to 0.9) 10.3 (–0.9 to 21.4)
P value NA NA <.001 .01 .07
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Abbreviations: BMI, body mass index; DOS, duration of symptoms; NA, not applicable; %TGW, percentage of treatment goal weight.

Patient Disposition

A total of 169 children and adolescents (81.6%) required outpatient medical monitoring: 103 (49.8%) were followed up by the CIPs and 29 (14.0%) by their primary care physician. A variety of outpatient treatments were used, including nutritional counseling (128 [61.8%]), psychoeducation (104 [50.2%]), family therapy (104 [50.2%]), and individual therapy (56 [27.1%]). The CIPs recommended that 56 (27.1%) of the 207 identified children and adolescents with ARFID be referred to a medical or mental health subspecialist. When we compared the 106 children (51.2%) who were followed up by an ED program after discharge with the 101 (48.8%) receiving other treatments, no significant differences in mean (SD) age were found (13.3 [2.83] vs 12.8 [3.5] years; P = .26), sex (female:male) (62.3:37.7 vs 60.4:39.6; P = .89), mean (SD) DOS (33.6 [38.9] vs 36.9 [41.3] months; P = .57), diagnostic criteria for ARFID (A1: 61.3% vs 52.5%; P = .25; A2: 33% vs 31.7%; P = .95; A3: 31.1% vs 32.7%; P = .93; A4: 71.7% vs 62.4%; P = .20), HR at presentation (79.4 beats beats per min [23.9 beats beats per min] vs 75.95 beats beats per min [17.92 beats beats per min]; P = .27), hospitalization (46.2% vs 34.7%; P = .12), or the presence of depression (9.4% vs 10.9%; P = .91) or anxiety (51.9% vs 45.5%; P = .44).

Discussion

This cross-sectional study is, to our knowledge, the first study to use active surveillance study methods to report the incidence and age- and sex-specific clinical characteristics of children and adolescents with ARFID. The overall incidence of ARFID was 2.02 patients per 100 000 patients. By comparison, a Canadian study34 of restrictive EDs in children 5 to 12 years of age that used similar methods documented an overall incidence of 2.6 per 100 000 patients; these data included children who would now be diagnosed with ARFID. In contrast to their findings, our study focuses exclusively on children and adolescents (5-18 years of age) who meet the DSM-5 criteria for ARFID. The incidence of ARFID was highest among adolescents 10 to 14 years of age (3.43 per 100 000 patients) and girls 15 to 18 years of age (2.24 per 100 000 patients). Like other EDs, ARFID does not discriminate across sex, race, or ethnicity among Canadian children and adolescents.35,36

The findings of this study suggest that pediatricians are more familiar with ARFID than previously reported. In 2014, a CPSP survey revealed that 63% of CIPs were unfamiliar with the diagnosis of ARFID, whereas of those who suspected a diagnosis of ARFID, 30% inappropriately applied the criteria, resulting in a misdiagnosis.37 In contrast, only 13% of patients in this study were excluded for inappropriate application of the diagnostic criteria. Pediatricians seem to have become skilled at using all the DSM-5 criteria to make their diagnosis.38 The most cited ARFID criterion was A1 (186 [89.9%]). The CIPs also identified criterion A4 in 67.1% of the patients, highlighting the substantial toll that a feeding disturbance can have on both individual and family functioning. A total of 58.5% of children and adolescents had more than 1 DSM-5 diagnostic criteria, suggesting the overlap of and broad range of ARFID presentations. However, little is understood about the heterogeneity of ARFID presentations. Although the DSM-5 suggests 3 examples of ARFID presentations, the existence of discrete groups requires further exploration.20,25,39,40

This study found age-specific differences in the clinical characteristics of children and adolescents with ARFID. The CIPs reported that older individuals were more likely to meet criterion A1, including A1a and A1c. This finding is consistent with the finding that older children (10-18 years of age) were more likely to present with a lower mean BMI z score, lower %TGW, and bradycardia. Consistent with a previous report,40 symptoms of eating but not enough and loss of appetite were significantly higher among the older cohorts. These symptoms, often a change from baseline associated with stress, depression, or anxiety, coupled with increased energy needs during adolescence41 and increased autonomy over food choices and eating decisions,42 could contribute to the behaviors and the more short-term medical findings in these adolescents. Similarly, children 10 to 14 years of age had the highest tendency to exhibit faltering growth during the adolescent growth spurt.43 These results reinforce the importance of early identification and treatment of ARFID.44,45 Symptoms of apparent lack of interest in food, avoidance of certain foods, and refusal based on sensory characteristics were more prevalent among younger children,22 suggesting that developmental differences may drive food avoidance in children with ARFID.20,25,39,40 In keeping with results from previous studies,3,5,23,46,47,48,49,50 our cohort had high rates of anxiety and, to a lesser extent, depression.5,11,15,16,22,23,51

This study characterizes sex-specific findings. This study had the highest proportion of boys within a pediatric ARFID cohort, suggesting that boys with ARFID are more likely to be identified in the community than in other settings. The CIPs reported that girls were more likely to meet criterion A1 than boys; however, older boys had greater mean weight loss than girls. Boys and girls with ARFID also seem to differ in specific eating behaviors: eating but not enough was more common in girls, whereas boys, in contrast to previous reports,52 had a higher rate of refusal to eat because of sensory characteristics of foods.

Our study also highlights a high prevalence of medical symptoms among children and adolescents with ARFID. Most symptoms were a recognized consequence of malnutrition.53,54 A total of 57.4% of the girls in our study who had reached menarche had irregular menses or secondary amenorrhea, which was associated with a lower HR. Evidence suggests that hypoestrogenemia among young women is associated with abnormal vascular function and autonomic regulation. The underlying mechanism and potential consequences on future health require further study in girls with ARFID.55

Those who were hospitalized had higher rates of the DSM-5 criteria A2 to A4. Those with lower mean %TGW and mean BMI z score and concomitant anxiety and depression were more likely to be hospitalized than those who were not hospitalized. Our results suggest that increasing medical and psychological complexity with increasing age could explain the higher observed rates of hospitalization among the older age group.

Because ARFID is a new diagnosis, evidence that supports specific treatment strategies is sparse. Currently, treatment is directed by the individual needs and symptoms of the child or adolescent. Our results corroborate this: the CIPs in our study selected no consistent treatment strategy.56 In fact, they made use of a variety of medical, nutritional, and psychological treatment options. No identifiable clinical characteristics were associated with follow-up by an ED program compared with other treatments. This points to the need for a better understanding of how patient characteristics inform treatment needs across the spectrum of feeding disturbances.44,45,49,57,58,59,60

Strengths and Limitations

The strengths of this study include the application of the highly rigorous CPSP methods that enabled national, prospective, timely, and active surveillance by all Canadian pediatricians. The high response rate lends credibility to the research and results.61 A few limitations warrant consideration. The incidence of ARFID may be an underestimation and include a reporting bias; patients were identified only by the CIPs and did not include patients identified by other health care professionals. Furthermore, it is possible that the CIPS may have overlooked a diagnosis of ARFID in children and adolescents with normal weight or overweight. In addition, we were unable to explicitly capture avoidance or restriction of eating because of a fear of aversive consequences. This study did not provide information about the use of long-term health services, prognosis, or medical and psychiatric treatment responses, which are areas that require future study.

Conclusions

The findings of this study suggest that ARFID is a relatively common ED in children and adolescents that is associated with important age- and sex-specific clinical characteristics and behaviors. These findings affirm the heterogeneity of the clinical presentations noted in this pediatric population. This study also illustrates substantial medical and psychological complications associated with ARFID, underscoring the need for pediatric health care professionals to be familiar with the identification and clinical management of this disorder. The complexity of the illness and the variability of its clinical presentations are further complicated by the important developmental changes that occur throughout childhood and adolescence. These results suggest that ARFID must be evaluated in the context of life-span considerations, together with the variability associated with sex differences. Further research is needed to better understand how age- and sex-specific differences can help inform developmentally appropriate treatments that effectively target feeding-related symptoms and help to minimize distress and impairment in children and adolescents with ARFID.

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