To kick off this year's Eating Disorders Awareness Week blog series, Dr Michelle Sader reflects on the complexities of a largely unknown and misunderstood eating disorder, Avoidant/Restrictive Food Intake Disorder (ARFID), which is the focus of Beat's EDAW 2024 campaign.
Avoidant/restrictive Food Intake Disorder (ARFID) is a severe feeding and eating disorder (FED) marked by food avoidance or restricted food intake. Individuals with ARFID restrict the amount of food eaten, and therefore do not get enough calories, or restrict the range of foods eaten, resulting in diminished health [1,2]. Importantly, ARFID differs from the generalised term “picky eating”[3]. Instead, individuals with ARFID experience severe health-related and psychological consequences resulting from their disordered eating. The formal diagnosis of ARFID did not exist until 2013 [1], and while ARFID is a new term, eating problems associated with the FED have long been recognised by clinicians. Referrals for ARFID are increasing, but health services lack an evidence base to effectively support these individuals [4].
Inherent to ARFID is a persistent lack of obtaining required dietary needs for reasons separate to body image disturbances or fear of gaining weight, often seen in eating disorders (EDs) such as anorexia nervosa (AN) [1,2,5]. Difficulties in meeting dietary needs in ARFID can be driven by a lack of interest in food, sensory-related avoidance of food based or concerns about aversive consequences of eating, such as choking [1,2,6-8]. However, individuals do not need to have a low weight to meet criteria for ARFID, and weight-state can vary across the spectrum [9]. On average, individuals with ARFID are younger [10-12] and contrasting other EDs, exhibit higher prevalence in male relative to female individuals [8,10-12,13-17]. However, recent community-based reports observe similar male-to-female distributions in ARFID [18-22], with further research warranted to validate associations between gender and disorder prevalence.
ARFID can exert a significant impact on an individual’s physical health. A common and often diagnostic consequence from restrictive eating habits displayed in ARFID is weight loss, compromised growth, as well as significant malnutrition and/or a dependence on supplements [1,2,6] due to vitamin and mineral deficiencies [23,24]. ARFID can also significantly impact an individual's mental health [25-27], with prevalence reports ranging between 9.1%-72.0% in anxiety disorders and 4.0%-33.0% in mood disorders [10,11,13,27,28-31]. Across individuals with ARFID, 57.1% present with one and 14.3% present with more than one co-occurring psychiatric diagnosis. Studies demonstrate significant interference to social, occupational and school-related functioning in those with ARFID [8,32,33] as well as significant impact to health-related quality of life [27,34]. There is also a high proportion of neurodivergent individuals exhibiting co-occurring ARFID, with reported ARFID prevalence rates in Autism ranging between 3% to as high as 55% [10,30,35-37]. Attention deficit hyperactivity disorder (ADHD) has also been reported to be over-represented in ARFID populations, with studies suggesting ADHD to be significantly more prevalent in ARFID populations than other EDs, such as in AN populations [31,38].
Prevalence rates of ARFID highly vary across literature [12], ranging between 0.3%-17.9% in global populations [5,16,18,20,21,27,29,34,39-42], and 0.9%-32% in clinical eating disorder (ED) populations [8,10,11,28,31,42-47]. Within the UK and Republic of Ireland, preliminary research finds the minimum incidence of diagnosed ARFID in youth is reported to be 3.09 per 100,000 individuals [48]. There are also high proportions of individuals with ARFID also suffering from gastrointestinal (GI) symptoms, with ARFID prevalence ranging from 1.5%-32% across GI clinics [13,48-51]. Multiple prevalence reports demonstrate that rates of ARFID are higher than rates seen in other EDs, such as in AN (where global prevalence ranges between 0.044%-1.95%) or bulimia nervosa (where global prevalence ranges between 0.1%-2.95%) [52,53]. Similarly, the duration of illness for those with ARFID is reported to be similar [33] or longer [11,54] than duration observed in other EDs such as AN [23], alongside similar rates of recovery and disorder outcome [33,55,56] .
Due to the novelty of the ARFID diagnosis, there are multiple barriers to treatment, such as lack of awareness and education of the FED, limited access to standardised care pathways, and existing stigma concerning the perceived severity of ARFID [57-60]. Healthcare professionals not only struggle to characterise or diagnose children with ARFID, but also find difficulty in identifying professionals or organisations capable of further assessment, treatment and support [58]. Consequently, neither the National Institute of Health and Care Excellent (NICE) nor the Scottish Collegiate Guidelines Network (SIGN) guidelines on the treatment of EDs make any recommendations on the treatment of ARFID. Despite impediments, current reports highlight the efficacy of cognitive-behavioural therapy (CBT) [61], family-based treatment [62-64], food exposure [61], psychological intervention (such as positive reinforcement [62,63]) and anxiety management [64,65]. Importantly, research heavily focuses on treatment-based approaches across childhood and early adolescence, with further studies necessary to understand ARFID recovery and outcome in adulthood [66].
In summary, ARFID is incredibly complex, presenting significant challenges in diagnosis and treatment, with profound implications for physical and mental health. Despite increasing recognition, barriers to support persist, highlighting the need for further research and development of evidence-based interventions.
Dr Michelle Sader is a post-doctorate researcher at the University of Aberdeen, working on the Eating Disorders and Autism Collaborative (EDAC), a research project in collaboration with the University of Edinburgh and King’s College London. Michelle obtained her BSc in Neuroscience and Psychology from the University of Aberdeen, with her PhD having focused on further elucidating the neural mechanisms involved in emotional and appetitive regulation. At EDAC, she aims to assist in dismantling stigma, fostering inclusivity, and providing a supportive environment for autistic individuals with an ED.
Acknowledgements
I would like to extend an enormous thanks to Dr Emy Nimbley (University of Edinburgh) and Dr Samuel Chawner (Cardiff University) for their collaborative work and review of the existing ARFID literature, which served as a primary source for this material.
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