Children with avoidant/restrictive food intake were significantly more likely than control individuals to have developmental difficulties than healthy control individuals, based on data from more than 35,000 children.

Restricted eating or eating only a narrow range of foods is characteristic of a diagnosis of avoidant-restrictive food intake disorder (ARFID) based on the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). However, data on the prevalence of ARFI and the developmental characteristics of these children are limited, Ludvig Daae Bjørndal, PhD, of the University of Oslo, Oslo, Norway, and colleagues wrote.

“Far too often, parents whose children have serious ARFI feel dismissed by healthcare professionals, schools, and even other parents who claim, ‘it’s just a phase, they’ll grow out of it,’” said co-author Cynthia Bulik, PhD founding director of the University of North Carolina Center of Excellence for Eating Disorders, Chapel Hill, North Carolina, in an interview.

Dismissing the problem as simply a phase both invalidates the families’ experience and misses the potential for a serious eating disorder in children with avoidant or restrictive food intake, Bulik said. The new research clearly demonstrates an underlying genetic basis for these serious eating conditions, she said.

The results showed not only a substantial prevalence of ARFI — approximately 3% — in the general pediatric population but also the increased risk for a range of developmental difficulties in these children.

In a study published in JAMA Pediatrics, the researchers examined data from a cohort of children born between 1999 and 2009 in Norway who were enrolled in a population-based study and had mother-reported data on ARFI. The study population included 35,751 children (51% boys) with ARFI assessments at ages 3 and 8. The children were classified into groups based on broad ARFI symptom persistence: transient (identified at age 3 only), emergent (identified at age 8 only), and persistent (identified at ages 3 and 8).

The prevalence of transient, emergent, and persistent ARFI was 17.7%, 8.4%, and 6.0%, respectively. Children who met these criteria and had at least one indicator of clinical significance, such as a nutritional deficiency, were further classified into ARFI clinical subgroups, with clinical ARFI prevalences in transient, emergent, and persistent subgroups of 3.2%, 1.4%, and 1.8%, respectively.

Developmental difficulties were assessed over 14 years using multiple measures. Overall, children with any clinical ARFI were more likely than those without ARFI to have diagnoses including intellectual disability, global developmental delay, autism, attention-deficit/hyperactivity disorder, and gastrointestinal disorders.

The researchers also conducted a genetic analysis and identified two independent genome-wide significant loci. They found a significant association between ARFI-clinical classification and the ADCY3 gene, as well as small to moderate genetic correlations related to ARFI-broad characterization, ARFI-clinical characterization, and mental health, cognitive/educational, anthropometric, food-associated, and gastrointestinal disorder phenotypes.

Results Reveal Drivers

“Having worked clinically with these families before ARFID was recognized in the DSM-5, their distress was apparent,” Bulik told Medscape Medical News. “It was always clear to me that ARFID wasn’t just the type of transient picky eating that many children experience developmentally but something much more serious and difficult to treat,” she added.

“Pediatricians and other healthcare professionals need to listen deeply to parents and not be dismissive of severe selective eating,” said Bulik. “Children who present with severe selective eating should also be screened for additional neurodevelopment conditions to ensure early detection and intervention,” she added.

The findings were limited by several factors including the focus only on avoidant and restrictive food intake, which does not include the full range of diagnostic criteria for ARFID, the researchers noted in their discussion. Additional limitations included possible selection bias and the fact that the study population was of European ancestry only, they said.

However, the results support the importance of early identification of children with persistent ARFI, Bulik said. Identification of genetic links is important for characterizing the condition in future studies, she added.

“Several studies are currently underway that are enrolling large groups of children and adults with ARFID to conduct more powerful research on genetic and environmental contributions to the condition,” said Bulik. “These large sample studies are the essential next step to fully understanding ways in which genes contribute to ARFID, and they are likely to show that there are indeed various forms of ARFID, each of which requires different approaches to treatment,” she said.

More information about studies in the US (currently for those aged 18 years or older), is available at the website of the Eating Disorders Genetics Initiative.

Raising Awareness and Revealing Opportunities

“Pediatric providers care for children with feeding disorders in all areas of practice, both inpatient and outpatient,” said Catherine Haut, DNP, CPNP-AC/PC, in an interview.

Identifying a specific diagnosis for a feeding disorder is challenging as these problems can be attributed to short-term issues, such as the “picky eater,” or more complex problems, said Haut, an associate professor at Thomas Jefferson University and director of Nursing Research and Evidence-Based Practice at Nemours Children’s Health, Wilmington, Delaware.

The number of children diagnosed with ARFID in Norway, as well as the suggestion by the researchers that this problem could have genetic links, was surprising, said Haut, who was not involved in the study. However, the results make sense, indicating a need for more detailed correlation of signs, symptoms, and physical and mental health-associated findings, she said. Rising rates of pediatric mental health problems and developmental delay in children in the US highlight the need for science-based rationales, especially if they enable early identification and treatment, she added.

“The challenge of diagnosing a child with ARFID may be complex but is important, especially with potential associated neurological, gastroenterological, and mental and behavioral comorbidities,” Haut said. “Awareness of available genetic testing, and evaluation of symptoms, presentation, and clinical findings offer opportunities for early diagnosis and treatment, which is always needed when developmental and behavioral issues are raised in children,” she said.

The data were collected in Norway between 1999 and 2008, which may not reflect the current state of the condition or associations in other populations, Haut told Medscape Medical News. Additionally, the authors noted that study genomics could only be associated with European ancestry, which highlights the need for similar studies in the US, she said.

This study was funded by the Norwegian South-East Regional Health Authority through grants to Bjørndal and other coauthors. Bulik disclosed no financial conflicts of interest. 

Haut disclosed no financial conflicts of interest.