Prevalence of a History of Dysphagia Among Pediatric Patients With Avoidant/Restrictive Food Intake Disorder

Abstract

Graphical Abstract

Key Messages

• Prevalence of dysphagia (especially chewing problems) in a cohort of 229 pediatric avoidant/restrictive food intake disorder (ARFID) patients is higher than the prevalence of dysphagia in similar age groups in the literature.

• Prompt management of dysphagia may reduce the risk of feeding difficulties that hold potential to develop into ARFID.

• Long periods of tube feeding can further increase the risk of ARFID progression.

Introduction

Pediatric feeding disorder (PFD) may develop into the psychiatric condition avoidant/restrictive food intake disorder (ARFID) when avoidance/restriction of food intake, not motivated by a body image disturbance, results in significant weight loss, malnutrition, dependence on enteral feeding or nutritional supplements, or marked interference with psychological functioning.^1,2 Dysphagia, a condition commonly treated by otolaryngologists that falls under PFD, has the potential to transition into ARFID if food avoidance persists after resolution of dysphagia.

A concurrent diagnosis of ARFID and a medical condition may be considered if diagnostic criteria for both are fulfilled, eating disturbances are greater than that associated with the medical condition, persist after its successful treatment, and are a primary focus for intervention owing to associated impairment. ² We report the association between an ARFID diagnosis, a history of pediatric dysphagia, and the degree of diet restriction in patients with dysphagia and ARFID development.

Methods

A retrospective cohort study of patients with a diagnosis of ARFID admitted to a multidisciplinary intensive feeding program at a tertiary/quaternary care center over a 5- year period was conducted. All patients underwent a multidisciplinary evaluation involving practitioners from the medical (nurse practitioner, pediatrician), nutrition (registered dietitian), feeding skill (speech language pathologist), and psychosocial (psychologist) domains prior to the admission. A psychologist confirmed the ARFID diagnosis at the time of the evaluation. Admission to the program requires that the dysphagia symptoms be resolved or be effectively manageable (eg, thickened liquid viscosity) prior to a focus on advancing oral intake. Patient demographics, ARFID subtype, and prevalence of dysphagia as documented by prefeeding program enrollment videofluoroscopic swallow study (VFSS) or by the speech language pathology (SLP) assessment were collected. ARFID subtypes include A1 (faltering growth), A2 (nutritional deficiencies), A3a (dependence on enteral feeding), A3b (dependence on nutritional supplements), and A4 (interference with psychosocial functioning). The presence and type (oral vs pharyngeal) of dysphagia on both the VFSS and SLP clinical evaluation were noted. Notes were reviewed for recommendation regarding the feeding regimen and dietary restrictions, and a functional oral intake scale (FOIS) score, ranging from 1 (nothing by mouth) to 7 (total oral diet with no restrictions) ³ was assigned.

Results

Two hundred twenty-nine patients were identified, with ages ranging from 0.9 to 19.2 years, a median age of 4.25 years and an interquartile range of 3.8. The most common ARFID subtypes were A3a and A2 (Figure 1). All patients were assessed by an SLP, 110/229 (48%) of patients completed a VFSS. The VFSS was done before the enrollment to the program by a median of 13 months (interquartile range of 21 months). One hundred fifty/229 patients (65.5%) had dysphagia prior to the admission to the program, including 48/229 (21%) with pharyngeal phase dysphagia and 142/229 (62%) with oral phase dysphagia. Of those patients who underwent preadmission VFSS, 30/110 (27%) had penetration or aspiration. The most common FOIS score was 2, tube dependence with minimal attempts of food or liquid (Figure 2). FIOS was ≤2 in 68% of patients with pharyngeal dysphagia.

Figure 1.

Distribution of ARFID subtypes in study cohort. ARFID, avoidant/restrictive food intake disorder.

Figure 2.

Distribution of FOIS scores in study cohort. FOIS, functional oral intake scale.

Discussion

The prevalence of dysphagia in a cohort of patients with ARFID was found to be 65.5%, with 21% having pharyngeal dysphagia. With a yearly incidence of pediatric dysphagia of 1% in the general population, ⁴ the high percentage of history of dysphagia in ARFID patients may suggest that swallowing dysfunction may lead to aversion to oral intake. Reasons may include refusal of oral feeding due to discomfort associated with dysphagia or aversion due to lack of skill development from a restrictive diet due to risk of aspiration and penetration.

Research suggests a large proportion of patients have resolution of dysphagia with both conservative and surgical management.^5-7 However, it appears if unmanaged or managed inappropriately, the downstream consequence of food aversion/refusal may develop, resulting in further burden on the healthcare system and families. Prompt identification and management of newly identified dysphagia, as well as minimizing near or complete nil per os status may mitigate the risk of ARFID development.

Limitations include a small sample size, retrospective study design, and inclusion of data from a single institution. Future research should compare standard of care for management of pediatric dysphagia with a protocol for expeditious management to see if the risk of ARFID and other negative outcomes are decreased.