Lower quality of life in children with ARFID

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Young children with Food Intake Disorder Avoidant/Restrictive Food Intake Disorder (ARFID) have a lower quality of life than both healthy and chronically ill peers. This has emerged from research, on which doctor Hilde Krom recently obtained her PhD at the University of Amsterdam. She also conducted research into weaning from tube feeding in children.


ARFID is characterized by a deviating growth curve, nutritional deficiencies, dependence on nutritional supplements or tube feeding and limitations of psychosocial functioning. This avoidant/restrictive food intake disorder is included in the 5e edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

Psychosocial problems

Krom researched the impact of ARFID on the daily lives of children with ARFID and their parents. Compared to healthy peers and peers with a chronic disease, quality of life in young children with ARFID was found to be lower in several domains, including appetite, motor function and vivacity. According to Krom, a child psychologist can play an important role in counseling psychosocial problems that can occur in addition to the nutrition-related problems.


Parents of children with ARFID more often reported misunderstanding from the environment compared to parents of healthy children. Mothers of these children also more often experienced insufficient support from their environment. According to Krom, it is important to keep this in mind and to refer parents to professional help if necessary.

Tube feeding

A large part of Krom’s thesis focuses on tube feeding in children with nutritional disorders. Every year, almost 1 in 1,000 children receive tube feeding at home. A survey of 279 parents of tube-fed children shows that nearly 2 in 3 of them have a gastrostomy tube and 1 in 3 have a nasogastric tube. Of the children with a nasogastric tube, 57 percent experienced the placement as traumatic according to the parents. Three-quarters of tube-fed children have side effects such as vomiting, loss of appetite and retching.

Tube feeding dependence

More than 35 percent of the parents surveyed suspect that their child is tube feeding dependent, even though the primary cause has already been resolved. Weaning (weaning) from tube feeding is challenging, according to Krom, and requires guidance from a multidisciplinary team. The multidisciplinary clinical hunger challenge is a method for weaning young tube-feeding dependent children quickly, within 2-3 weeks. Following a strict protocol, the tube feeding is tapered off in steps and finally stopped completely to induce starvation.

Clinical hunger provocation

In a study, Krom looked at the effectiveness of clinical hunger provocation in 42 children. In the short term, this proved to work for 86 percent of the children and after an average of more than 5 years it was still effective for 78 percent of the children. Selective eating, nocturnal feeding and hospital admissions were less common in children who successfully weaned compared to children who failed clinical hunger provocation. However, among the successfully weaned children, more than 40 percent met the criteria for malnutrition. Nearly 60 percent had signs of developmental delay and more than 40 percent had new medical or psychiatric diagnoses. That is why Krom advocates continuing to monitor the growth and development of children who have been weaned from the probe.

Source: Thesis Hilde Krom

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