Kathleen A. Mammel

Characteristics of Avoidant/Restrictive Food Intake Disorder in Children and Adolescents: A “New Disorder” in DSM-5

PURPOSE To evaluate the DSM-5 diagnosis of Avoidant/Restrictive Food Intake Disorder (ARFID) in children and adolescents with poor eating not associated with body image concerns. METHODS A retrospective case-control study of 8-18-year-olds, using a diagnostic algorithm, compared all cases with ARFID presenting to seven adolescent-medicine eating disorder programs in 2010 to a randomly selected sample with anorexia nervosa (AN) and bulimia nervosa (BN). Demographic and clinical information were recorded. RESULTS Of 712 individuals studied, 98 (13.8%) met ARFID criteria. Patients with ARFID were younger than those with AN (n = 98) or BN (n = 66), (12.9 vs. 15.6 vs. 16.5 years), had longer durations of illness (33.3 vs. 14.5 vs. 23.5 months), were more likely to be male (29% vs. 15% vs. 6%), and had a percent median body weight intermediate between those with AN or BN (86.5 vs. 81.0 and 107.5). Patients with ARFID included those with selective (picky) eating since early childhood (28.7%); generalized anxiety (21.4%); gastrointestinal symptoms (19.4%); a history of vomiting/choking (13.2%); and food allergies (4.1%). Patients with ARFID were more likely to have a comorbid medical condition (55% vs. 10% vs. 11%) or anxiety disorder (58% vs. 35% vs. 33%) and were less likely to have a mood disorder (19% vs. 31% vs. 58%). CONCLUSIONS Patients with ARFID were demographically and clinically distinct from those with AN or BN. They were significantly underweight with a longer duration of illness and had a greater likelihood of comorbid medical and/or psychiatric symptoms.

Distribution of eating disorders in children and adolescents using the proposed DSM-5 criteria for feeding and eating disorders.

PURPOSE To determine the distribution of eating disorders (ED) in children and adolescents comparing the fourth edition of the Diagnostic and Statistical Manual (DSM) to the proposed fifth edition DSM criteria. METHODS A total of 215 consecutive patients (15.4 ± 3.3 years) presenting for initial ED evaluation to adolescent medicine physicians from six institutions were assigned ED diagnoses using current DSM-IV criteria as well as proposed DSM-5 criteria. RESULTS Diagnoses of anorexia nervosa and bulimia nervosa increased using the proposed DSM-5 criteria (from 30.0% to 40.0% and from 7.3% to 11.8%, p < .001). Approximately 14% of patients received the presumptive DSM-5 diagnosis of avoidant/restrictive food intake disorder. Cases of ED not otherwise specified decreased from 62.3% to 32.6% (p < .001). CONCLUSIONS Proposed DSM-5 criteria substantially decreased the frequency of ED not otherwise specified diagnoses and increased the number of cases of anorexia nervosa and bulimia nervosa in a population of young patients presenting for ED treatment. Avoidant/restrictive food intake disorder appears to be a significant diagnosis.

Research Consent by Adolescent Minors and Institutional Review Boards

PURPOSE A national survey of institutional review boards (IRBs) was conducted to determine: (1) the current practices of IRBs concerning consent for adolescent minors; and (2) the existence of support for changes in the federal regulations for research on adolescents. METHODS Six hundred surveys were mailed in two waves to all IRB chairs in the United States, with the exception of highly specialized institutions. The survey consisted of three sections. Section 1 assessed demographic data, such as institution type; presence of personnel trained in adolescent health; and number of protocols involving adolescents reviewed annually. Section 2 presented a series of twelve scenarios for which respondents stated whether their IRB would waive parental consent under present federal regulations. These scenarios varied the sensitivity of information and procedural invasiveness, and ranged from simple satisfaction surveys to experimental drug treatment for AIDS. Section 3 assessed whether respondents would recommend changes in current federal regulations that would enable adolescent minors to provide their own consent to research participation. To this end, respondents indicated whether minor consent alone is sufficient or if parental consent should be required for 10 general research categories that paralleled the level of invasiveness of the scenarios presented in Section 2. RESULTS Two hundred and thirty-three surveys (39%) were returned and 183 (30%) were fully scorable. Within group comparisons for IRBs were conducted using Chi-square statistics. Seventy percent of respondent IRBs required parental consent for all research on minors, and IRBs reviewing more than 10 adolescent protocols per year were less likely to require parental consent (p < .01). Responses did not differ by institution type or presence of personnel trained in adolescent health. Fifty-two percent of respondent IRBs required parental consent for a simple satisfaction survey, and only 29% of IRBs would waive parental consent for an anonymous HIV seroprevalence study. Over one-half of IRBs supported changes in regulations that would enable minors to provide informed self-consent for seven of 10 general research categories: anonymous surveys (supported by 93%), research involving sensitive material if nothing more than survey (89%) or venipuncture (53%) were involved, and research on diseases for which minors may consent to treatment including survey (93%), venipuncture (68%), or medication approved for use in pediatric patients (57%). CONCLUSION Even though IRBs practice under the same federal regulations there is a broad spectrum of interpretation. Considerable support exists for changing the guidelines for certain categories of research involving adolescents. Federal regulations need to be clarified for meaningful and necessary research on adolescents to take place.

Predictors of Outcome at 1 Year in Adolescents With DSM-5 Restrictive Eating Disorders: Report of the National Eating Disorders Quality Improvement Collaborative

PURPOSE The National Eating Disorders Quality Improvement Collaborative evaluated data of patients with restrictive eating disorders to analyze demographics of diagnostic categories and predictors of weight restoration at 1 year. METHODS Fourteen Adolescent Medicine eating disorder programs participated in a retrospective review of 700 adolescents aged 9-21 years with three visits, with DSM-5 categories of restrictive eating disorders including anorexia nervosa (AN), atypical AN, and avoidant/restrictive food intake disorder (ARFID). Data including demographics, weight and height at intake and follow-up, treatment before intake, and treatment during the year of follow-up were analyzed. RESULTS At intake, 53.6% met criteria for AN, 33.9% for atypical AN, and 12.4% for ARFID. Adolescents with ARFID were more likely to be male, younger, and had a longer duration of illness before presentation. All sites had a positive change in mean percentage median body mass index (%MBMI) for their population at 1-year follow-up. Controlling for age, gender, duration of illness, diagnosis, and prior higher level of care, only %MBMI at intake was a significant predictor of weight recovery. In the model, there was a 12.7% change in %MBMI (interquartile range, 6.5-19.3). Type of treatment was not predictive, and there were no significant differences between programs in terms of weight restoration. CONCLUSIONS The National Eating Disorders Quality Improvement Collaborative provides a description of the patient population presenting to a national cross-section of 14 Adolescent Medicine eating disorder programs and categorized by DSM-5. Treatment modalities need to be further evaluated to assess for more global aspects of recovery.

An eleven site national quality improvement evaluation of adolescent medicine-based eating disorder programs: predictors of weight outcomes at one year and risk adjustment analyses.

PURPOSE This quality improvement project collected and analyzed short-term weight gain data for patients with restrictive eating disorders (EDs) treated in outpatient adolescent medicine-based ED programs nationally. METHODS Data on presentation and treatment of low-weight ED patients aged 9-21 years presenting in 2006 were retrospectively collected from 11 independent ED programs at intake and at 1-year follow-up. Low-weight was defined as < 90% median body weight (MBW) which is specific to age. Treatment components at each program were analyzed. Risk adjustment was performed for weight gain at 1 year for each site, accounting for clinical variables identified as significant in bivariate analyses. RESULTS The sites contained 6-51 patients per site (total N = 267); the mean age was 14.1-17.1 years; duration of illness before intake was 5.7-18.6 months; % MBW at intake was 77.5-83.0; and % MBW at follow-up was 88.8-93.8. In general, 40%-63% of low weight ED subjects reached ≥90% MBW at 1-year follow-up. At intake, patients with higher % MBW (p = .0002) and shorter duration of illness (p = .01) were more likely to be ≥90% MBW at follow-up. Risk-adjusted odds ratios controlled for % MBW and duration of illness were .8 (.5, 1.4)-1.3 (.3, 3.8), with no significant differences among sites. CONCLUSION A total of 11 ED programs successfully compared quality improvement data. Shorter duration of illness before intake and higher % MBW predicted improved weight outcomes at 1 year. After adjusting for risk factors, program outcomes did not differ significantly. All adolescent medicine-based ED programs were effective in assisting patients to gain weight.

Avoidant/restrictive food intake disorder: A new eating disorder diagnosis in the diagnostic and statistical manual 5

Purpose of review Avoidant/restrictive food intake disorder (ARFID) is a new eating disorder diagnosis in the 5th edition of the diagnostic and statistical manual (DSM-5), published in 2013. The purpose of this review is to describe the creation of ARFID as a diagnostic category, and to explain the DSM-5 diagnostic criteria; to demonstrate what is known thus far about the prevalence of ARFID and characteristics of patients with this disorder; to provide guidance to the pediatrician and other providers on making a diagnosis of ARFID; and to discuss evolving treatment approaches. Recent findings Several studies have been published recently on the prevalence and characteristics of patients with ARFID. Research has just begun to focus on new assessment measures, approaches to treatment based on established therapies for other eating/psychiatric disorders, and short-term outcomes. Robust treatment studies are in development. Summary The addition of ARFID to the DSM-5 has captured a category of patients with clinically significant restrictive eating, but without weight and shape concerns, who were poorly classified in the past. Future research is needed to further elucidate the presentation, characteristics, diagnostic instruments, and effective management.