The objective of this study was to gather knowledge and insight through a single-center pilot initiative of a clinic for youth with ARFID. Our experience highlighted several key findings that have helped our hospital better understand how resources can be aligned to best meet the needs of such patients. First, despite the very stringent inclusion criteria set for this initiative, a total of 31 patients were assessed, suggesting a strong need for a clinic or service within our hospital that serves older children and adolescents with complex feeding presentations.
Although our inclusion criteria for acceptance into the pilot clinic were purposefully narrow, our justification was that the high medical needs of patients assessed would almost certainly have resulted in assessment by at least one hospital-based physician or service during the timeframe that the pilot ran. Regarding inclusion criteria, this experience highlighted an important lesson learned relating to our omission of markers of impairment on our triage form. By only accepting referrals with demonstrated evidence of medical instability, we excluded patients that met criteria for ARFID solely on the grounds of psychosocial impairment, even when severe. This has relevance given recent study findings that suggest that the patients with ARFID who are included based primarily on the criterion of psychosocial impairment are often normal weight(12). Although one of our purposes in establishing this pilot clinic was to better understand the scope and complexity of issues that patients with ARFID might present with, our decision to limit inclusion criteria introduced bias into our results. This would be an important consideration for future program and resource planning. Further research is also required to clarify how the degree of psychosocial impairment affects illness presentation as well as response to treatment in each of the types of presentations of ARFID.
Although each of the proposed ‘motivations’ for feeding disturbances outlined in the DSM-5 was represented in this pilot endeavor, those presenting with primary feeding challenges related to the sensory domain (limited-variety type) were fewer in number as compared to those with other recognized presentations. Our own research has suggested that those with sensory-based food avoidance (i.e. extremely selective eaters) are less likely to present with markers of medical instability and as such, would have been less likely to meet inclusion criteria for this pilot initiative(10). Although ED-program specific research in this area remains in its infancy, the hypothesis that those with feeding issues related primarily to sensory difficulties have longer illness courses and lower rates of medical instability as compared to other ARFID presentations is supported by our current findings and a previous study with a larger sample size(10).
Conceptually, if food restriction in ARFID results from lack of appetite, difficulties with sensory characteristics of food, and/or fears related to the act of eating (or combinations of these characteristics), assessment tools and treatment plans need to be able to clearly delineate these specific etiologies, help confirm diagnoses, and meet specific patient treatment needs(13). Given current resource constraints as well as our ED program’s very specific approach to the assessment and treatment of patients with severe EDs such as AN and BN, it was unrealistic to assume that treatment options available for patients with AN and BN could cover the breadth of needs of patients with ARFID. Our data supported this assumption, with only 30% of patients exclusively receiving therapy by ED team members. Indeed, the issue of heterogeneous treatment requirements for patients with ARFID was regularly noted for those with mixed presentations. Not uncommonly, patients in this cohort required care by multiple team members across different disciplines, highlighting the necessity of a treatment framework that can adapt to meet the varying needs of patients, as opposed to a “one size fits all” approach. Of interest, a recent systematic review of interventions for severe feeding disorders suggested an intensive multidisciplinary team approach and is in keeping with a best-practice model(14).
In addition to these considerations, another lesson learned from the study relates to the limited capacity of existing programs to accommodate patients with ARFID. Despite strict inclusion criteria, and a limited assessment window, the pilot initiative resulted in 31 assessments in 18 months, or the equivalent of 21 new patients annually. This represents approximately one third of annual assessments typically completed by our ED program. Given that patients with ARFID are increasingly recognized as requiring prolonged treatment courses, considerations that relate to any existing program’s capacity to accept new referrals cannot be understated. As our hospital currently lacks a dedicated feeding team for children over the age of 6 years, the described pilot helped bring attention to existing treatment gaps (i.e. sensory-specific feeding interventions for older children and adolescents). It also highlighted the finding that a proportion of patients with ARFID benefit from feeding-specific interventions that involve support, education and gradual exposure to foods deemed unsafe or unappealing. Depending on the specific resources available within institutions, this treatment could be provided outside of the ED team (as was typically the case in this initiative) or by ED team members assuming additional training and support could be provided.
Regarding the assessment procedure, in keeping with the findings of Cooney and colleagues(15), our ED program’s psychometric measures were not specific for making a diagnosis of ARFID, and given resource constraints, the practice was stopped. Moving forward, should a coordinated program of evaluation be re-established, a number of inventories and measures are now available that would help practitioners better track progress of outcome variables specific to ARFID as treatment progresses(16, 17).
In keeping with previous studies, we demonstrated that patients accepted into this pilot study exhibited high rates of mental health comorbidity, the most notable of which was anxiety. This finding provides additional support for the utility of therapies that are mindful of the mental health needs of patients and that provide support and psychoeducation to families. As is the case in the treatment of AN, our initial emphasis in underweight patients with ARFID has been to renourish patients to an optimal TGW, with focus on improved nutritional intake and weight gain during the primary phase of treatment. A recent case series highlighted the multi-disciplinary team approach involving family therapy and cognitive behavioral therapy for the care of patients with varying ARFID presentations(18).
Patients that required inpatient hospitalization were discharged to outpatient services with continued emphasis on renourishment and treatment of the feeding disturbance. Although an emerging body of literature has suggested that patients with ARFID can be treated using day hospital models, our existing day treatment program (DTP) was designed for treatment of patients with AN and BN (e.g. includes groups focused on body image). We suggest that further research that explores the utility and optimization of DTP content would help programs such as our own to understand whether modifications should be considered to make the treatment suitable for patients with ARFID.
This pilot initiative also provided some insight into the use of pharmacotherapy as an adjunctive treatment for patients with ARIFD. We demonstrated that patients across all subtypes were treated with a myriad of different medications from different classes. As an example, atypical antipsychotics (such as olanzapine) were offered to half of the patients presenting with aversive presentations. Although not empirically studied herein, this treatment approach targeted anxiety in an attempt to allow the patient greater ability to accept foods deemed triggering or unsafe (e.g. something that they feared they would choke on, or would cause them to vomit) or to decrease the overall intensity of internal distress. To date, the evidence examining olanzapine efficacy in patients with ARFID has been limited to two case series(18, 19). The use of appetite stimulants (such as cyproheptadine) also requires further study in this population, in order to better understand how these agents might serve to promote nutritional intake and to what extent illness presentation predicts response(20).
Our outcomes at the six-month mark suggest that similar to those with other EDs, many patients with ARFID require intensive services for prolonged periods. Those with mixed presentations required care by many multidisciplinary team members, including other medical subspecialists. Although our small sample size precludes statistical comparisons, those with mixed presentations had higher rates of weight restoration at 6 months compared to patients with a single primary influence (e.g. selective eating or low appetite) for the feeding disturbance. It is difficult to know what, if any factors influenced this specific finding, although these patients had more diversified treatment teams. As the number of empirically studied treatments for patients with ARFID evolves, it is likely that researchers will gain a better understanding of how treatments should be dosed and delivered in order to optimize outcomes across respective presentations.
As noted throughout the discussion, this pilot study was not without limitations. We embarked on this initiative as a means of better understanding the types and presentations of patients that might present to a dedicated clinic for patients with severe ARFID. By limiting our inclusion criteria and the study timeframe, we introduced referral bias and limited our total sample. Our results are retrospective and given the lack of diagnostic instruments available at the time of the pilot, standardized and validated measures specific to ARFID were not utilized. Strengths of the study included the fact that a single provider with expertise in ARFID and complex feeding disorders triaged, assessed, and coordinated care for all patients. Also, a consistent interview template was used for all assessments. Remarkably, despite a lack of coordinated programming, almost all patients were weight restored by the time treatment concluded. Although not formally evaluated, chart review suggested that treating the subset of patients with sensory-specific feeding issues (i.e. limited-variety type) provided challenges given gaps within the hospital for services specific to the needs of this population. In cases where family-based therapy principles were applied to patients with sensory-specific issues, food selectivity often persisted despite success with weight gain. Most typically, these patients presented with long-standing histories of restrictive eating, dating back to infancy. The lack of a validated instrument that assessed severity and tracked progress in this particular area is another limitation of the study.
This pilot project provided additional evidence that there is an unmet need for coordinated services focused on the assessment and treatment of children and adolescents with complex feeding presentations. Although not formally tracked, a number of referrals were denied because they did not meet our strictly defined inclusion criteria. The small clinic ran at capacity throughout its 18-month operational window. Although we have demonstrated the effectiveness of ED team members to provide treatment to at least a proportion of patients (e.g. using family-based therapy and cognitive therapy), additional resources and the input of other multi-disciplinary care providers outside of the ED team were often required.