Children and Young people with Avoidant Restrictive Food Intake Disorder (ARFID)

15 Sep 2022

Executive summary

Avoidant/Restrictive Food Intake Disorder (ARFID) was introduced as a new mental health and behaviour disorder diagnosis in 2013. ARFID is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or eating small amounts due to lack of interest in food, high sensitivity to sensory aspects of food (such as texture, colour, or taste), and/or fear of aversive consequences such as being sick or choking. These restrictive eating patterns can result in significant health problems. It differs from other eating disorders in that people with ARFID do not restrict their food intake for the specific purpose of losing weight or managing feelings of fear and anxiety around their shape and size.

Dietitians with specialist training are essential for the management of ARFID from the point of assessment and diagnosis and throughout treatment. When dietitians are not embedded within a team and dietetic time is not adequately resourced, there is likely to be nutritional and dietary compromise of patients1,2. This will impact on their physical health and wellbeing, psychosocial functioning, quality of life, growth and may lengthen treatment of the patient with ARFID3. In turn this is likely to have cost implications, impact the rest of the team and affect patient care if the patient deteriorates further in health.

Services are currently being developed for CYP with ARFID throughout the UK. Funding to support adequate dietetic time in ARFID services is essential and this paper aims to identify what the BDA considers is adequate and why. Misdiagnosing and underdiagnosing ARFID has serious implications for patient care, and it requires specialist and multidisciplinary assessment and care pathways4. This position paper highlights the importance of early identification of nutritional deficit and management and the important role of dietitians.

Professor Waller (2019) comments that ARFID is "old wine in a new bottle" with a clear definition, description of the problem, identification, and intervention. Clinically, many dietitians agree that this is not a new problem, but a new definition and we have the skills, experience, and expertise to work with these patients.

Purpose of position statement

Across hospitals and health providers in the UK conversations are starting about ARFID services. This position paper is written by dietitians for dietitians, clinicians, commissioners, and service users to influence and support their position with those who provide and commission services for CYP with ARFID. This paper will help to raise awareness that dietitians are central to the assessment and treatment of these patients. When a team is adequately resourced with dietetic time, the contributions of the dietitian are invaluable to children, young people, their families as well as the team as a whole.1-3,5,6

What service users want...

ARFID Awareness UK, on behalf of parents/carers and individuals with ARFID says:

  • "Regardless of whether a GP is familiar with ARFID, he/she most often will refer a CYP with a restricted or avoidant diet to a dietitian for assessment/advice. As the first 'specialist' that the CYP is seeing, it is critical that the dietitian has been properly trained in the diagnosis and management of ARFID so that he/she is able to give the family advice."
  • "Advice from well-meaning family/friends, blogs, nurseries, health visitors and nutritionists that, although appropriate for the average CYP, could exacerbate the anxieties that underpin ARFID, resulting in further avoidant/restrictive eating and compound nutritional deficiencies. A dietitian with limited/no experience could do the same."
  • "With no two presentations of ARFID being the same, it is critical that the specialist dietitian is able to tailor the CYPs care plan to his/her needs; and that the dietitian is a principal member of a CYPs MDT team. ARFID is an anxiety based psychological disorder of which the dietitian manages its manifestation. Because other disciplines including clinical psychology, occupational therapists and speech and language therapists also have a role to play in the long-term treatment of ARFID, dietitians need to be working in partnership with them to ensure that they are providing optimal care."

Why are Specialist Dietitians important?

Dr Rosan Meyer says: "The risk of not employing a specialist dietitian with knowledge on working with ARFID as part of a multidisciplinary team managing patients with ARFID may therefore lead to provision of inappropriate dietary advice, which may do more psychological and/or physical harm by not recognising that patients with this diagnosis require unique sensory, psychological and nutritional management strategies."

The BDA emphasises in this position paper that there is limited research on the role and efficacy on all clinicians in ARFID, not just dietitians. Research is developing continuously, and it is hoped that this will include the role of the dietitian in ARFID.

Summary of key messages

  • Children and young people with ARFID present with complicated and varied histories and risk factors that include medical and psychological factors affecting nutritional intake.
  • Nutrients have very specific biological functions within the body. Nutritional deficiencies are known to be present in children and young people with ARFID and/or the common co-morbidities associated with ARFID such as autism and attention deficit hyperactivity disorder1.
  • CYP often present with extremely restricted intakes - severe selectivity refers to fewer than 10 foods in the diet. It becomes more problematic to obtain adequate nutrients the more selective the child’s intake becomes. Such diets put immense psychological and financial pressure on families, from obtaining and preparing safe foods, and often therefore different meals for family members, and an inevitable sense of failure some parents may experience.
  • Chronic poor diet can lead to physical compromise and clinical manifestations of weight loss (or faltering growth) and marked nutritional deficiencies3. The nutritional deficiencies are often specific to one or more nutrients and need correcting individually rather than with a generic multivitamin/mineral supplement.
  • The resourcing of skilled dietitians working with CYP with ARFID needs careful planning to be able to provide the necessary assessment and intervention. Consistent recommendations for eating disorders are for dietetic intervention to be part of a multidisciplinary team intervention, and not an intervention to be delivered in isolation6.
  • All dietitians working with CYP with ARFID should have specific training around ARFID. CAMHS dietitians who do not have a paediatric background will benefit from additional training to develop paediatric skills and knowledge. Likewise, paediatric dietitians are likely to benefit from additional training in mental health.

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