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

Introduction

This position statement was created by a specially convened working group including dietitians with expertise in this area.

Published date: June 2022

Renewal date: June 2024

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.

Background

ARFID is an eating disorder, newly categorised as a diagnosis in DSM-5 in 2013, but previously referred to by different names such as selective eating disorder, fussy eating, feeding disorder, picky eating, feeding disorder of infancy and early childhood7. Dietitians have been seeing patients with forms of restricted eating (some now known to have met the criteria for ARFID) for many years in a variety of settings including paediatrics, community child and adolescent mental health services (CAMHS), and adult services, such as gastroenterology and community.

Many Trusts and Health Boards do not have a dedicated clinical pathway or service for providing assessment and treatment to children, young people (YP) or adults with ARFID. Referrals for ARFID present in multiple services but as they do not fit ‘criteria’ and/or are unable to access clinical expertise they fall between the gaps. The clinical expertise is not present within any one service to meet the complex needs of this group of children. There are no evidence / practice guidelines which clearly describe the service specifications and clinical pathway required to manage this population.

Pathways need to be created locally to determine appropriate multi-disciplinary assessment and treatment for CYP with ARFID. This has major implication for funding/resourcing of dietetic time within services and specifically many CAMHS and CYP Eating Disorders Services and paediatrics where these patients are currently being signposted.

ARFID criteria

ARFID is a feeding disorder manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with at least one of the following criteria: significant nutritional deficiency, significant weight loss or failure to gain adequate weight, dependence on oral supplementation or tube feeding, and/or marked interference with psychosocial functioning. Avoidant restrictive feeding behaviours may arise because of poor tolerance of specific sensory-related aspects of food, fear of adverse consequences of feeding, and/or an overall lack of interest in food or feeding as classified in World Health Organization International Classification of Diseases, 11th Revision (ICD-11) definitions.8

References

  1. Yule, S.; Wanik, J.; Holm, E.R.; Bruder M.B.; Shanley, E.; Sherman, C.Q.; Fitterman, M.; Lerner, J.; Marcello, M.; Parenchuck, N.; Roman-White, C.; Ziff, M. (2021). Nutritional Deficiency Disease Secondary to ARFID Symptoms Associated with Autism and the Broad Autism Phenotype: A Qualitative Systematic Review of Case Reports and Case Series. Journal of the Academy of Nutrition and Dietetics, 12:3.
  2. Schmidt, R.; Hiemisch, A; Kiess, W.; von Klitzing, K.; Schlensog-Schuster, F.; Hilbert, A. (2021). Macro- and Micronutrient Intake in Children with Avoidant/Restrictive Food Intake Disorder. Nutrients, 13, 400.
  3. Yanagimoto, Y.; Ishizaki, Y.; Kaneko, K. (2020). Iron Deficiency anaemia, stunted growth and developmental delay due to ARFID in ASD. BioPsychoSocial Medicine; 14.
  4. Farag, F.; Sims, A.; Strudwick, K.; Carrasco, J.; Waters, A.; Ford, V.; Hopkins, J.; Whitlingum, G.; Absoud, M.; Kelly, V.B. (2021). Avoidant/ Restrictive Food Intake Disorder and Autism Spectrum Disorder: Clinical Implications for Assessment and Management. Developmental Medicine and Child Neurology; 64:2, 176-182.
  5. Harshman, S.G.; Wons O.; Rogers, M.S.; Izquierdo, A.M.; Pulumo, R.L.; Asanza, E.; Misra M.; Lawson, E.A.; Eddy K.T.; Thomas, J.J.; Holmes, T.M.; Micali N. (2019). A diet high in processed foods, total carbohydrates and added sugars, and low in vegetables and protein is characteristic of youth with avoidant/restrictive food intake disorder Nutrients; 11:9.
  6. Heruc, G.; Hart, S.; Stiles, G.; Fleming, K.; Casey, A.; Sutherland, F.; Jeffrey, S.; Robertson, M.; Hurst, K. (2020). ANZAED Practice and training standards for dietitians providing eating disorder treatment. Journal of Eating Disorders 8:77.
  7. American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.).
  8. World Health Organisation. (2018). International Classification of Diseases for mortality and morbidity statistics (11th Revision).
  9. Stewart, P.A.; Hyman, S.L.; Schmidt, B.L.; Johnson, C.R.; Jill James, S.; Manning-Courtney, P. (2015). Dietary Supplementation in Children with Autism Spectrum Disorders: Common, Insufficient, and Excessive. Journal of the Academy of Nutrition and Dietetics 115:8, 1237-1248.
  10. Zucker, N.; La Via, M.; Craske, M.G.; Foukal, M.; Harris, A.; Datta, N.; Savereide, E.; Maslow, G. (2019). Feeling and Body Investigators (FBI) – ARFID division: an acceptance-based interoceptive exposure treatment for children with ARFID. International Journal of Eating Disorders, 52:2, 466-472.
  11. Williams, K.E.; Hendy, H.M.; Field, D.G.; Belousov, Y.; Riegel, K.; Harclerode, W. (2015). Implications of Avoidant/Restrictive Food Intake Disorder (ARFID) on Children with Feeding Problems, Children's Health Care, 44:4, 307-321.
  12. Lucarelli, L.; Sechi, C.; Cimino, S.; and Chatoor, I. (2018). Avoidant/Restrictive Food Intake Disorder: A Longitudinal Study of Malnutrition and Psychopathological Risk Factors From 2 to 11 Years of Age. Front. Psychol. 9, 1608.
  13. Taylor, C.M.; Steerm, C.D.; Hays, N.P.; Emmett, P. (2019). Growth and body composition in children who are picky eaters: a longitudinal view. European Journal of Clinical Nutrition, 73, 869–878.
  14. Chandran, J.J.; Anderson, G.; Kennedy, A.; Kohn, M.; Clarke, S. (2015). Subacute combined degeneration of the spinal cord in an adolescent male with avoidant/restrictive food intake disorder: A clinical case report. Int. J. Eat. Disorders. 48, 1176–1179.
  15. Chiarello, F.; Marini, E.; Ballerini, A.; Ricca, V. (2018). Optic neuropathy due to nutritional deficiency in a male adolescent with Avoidant/Restrictive Food Intake Disorder: A case report. Eat. Weight Disord. 23, 533–535.
  16. Görmez, A.; Kılıç, A.; Kırpınar, ˙I. (2018). Avoidant/Restrictive Food Intake Disorder: An adult case responding to cognitive behavioral therapy. Clin. Case Stud., 17, 443–452.
  17. Strandjord, S.E.; Sieke, E.H.; Richmond, M.; Rome, E.S (2015). Avoidant/restrictive food intake disorder: Illness and hospital course in patients hospitalized for nutritional insufficiency. J. Adolesc. Health, 57, 673–678.
  18. Bryant-Waugh, R. (2013). Avoidant restrictive food intake disorder: An illustrative case example. Int. J. Eat. Disord., 46, 420–423.
  19. Mari-Bauset, S.; llopis-Gonsalez, A.; Zazpe-Garcia, I.; Mari-Sanchis, A.; Morales-Suarez-Varela, M. (2015). Nutritional status of children with autism spectrum disorders (ASDs): a case-control study. Journal of Autism and Developmental Disorders, 45:203–12.
  20. Sidrak, S.; Yoong, T. and Woolfenden, S. (2014). Iron deficiency in children with global developmental delay and autism spectrum disorder. J Paediatr Child Health, 50:356–61.
  21. Sharp, W.G.; Postorino, V.; McCracken, C.E.; Berry, R.C.; Criado, K.K.; Burrell, T.L.; Scahill, L. (2018) Nutrient Status, and Growth Parameters in Children with Autism Spectrum Disorder and Severe Food Selectivity. J Acad Nutr Diet., 118:10, 1943-1950.
  22. Taylor, C.M.; Northstone, K.; Wernimont, S.M.; Emmett, P. (2016). Macro and micronutrient intakes in picky eaters: a cause for concern. American Journal of Clinical Nutrition, 104,1647–56.
  23. Galloway, A.T.; Fiorito, L.; Lee, Y.; Birch, L.L. (2005). Parental pressure, dietary patterns, and weight status among girls who are “picky eaters”. Journal of American Diet Assoc., 105:541–8.
  24. Gerasimidis, K.; Bronsky, J.; Catchpole, A. et al. (2020). Assessment and interpretation of vitamin and trace element status in sick children: a position paper from the European society for paediatric gastroenterology hepatology, and nutrition committee on nutrition. Journal of Paediatric Gastroenterology and Nutrition, 70: 6 873-881.
  25. Golden, M. (2009). Proposed recommended nutrient densities for moderately malnourished children. Food Nutrition Bull 30 (3 Suppl), S267-342.
  26. Benezech, S.; Hartmann, C.; Morfin, D.; Bertrand, Y.; Domenach, C. (2020). Is it leukemia, doctor? No, it’s scurvy induced by an ARFID! Eur J Clin Nutr 74, 1247–1249.
  27. Likhitweerawong, N.; Boonchooduang, N.; Morakote, W. et al. (2021). Scurvy mimicking as systemic lupus erythematosus. BMJ Case Reports, 14.
  28. Munro, L. and Meyer, R.W. (2021). ARFID: An introduction to diagnosis & Management. University of Winchester. https://store.winchester.ac.uk/shortcourses/faculty-of-health-and-wellbeing/healthcare-professionals/arfid-anintroduction-to-diagnosis-and-management [Accessed online March 2021]
  29. Nicely, T.A.; Lane-Loney, S.; Masciulli, E.; Hollenbeck, C.S.; Ornstein, R.M. (2014) Prevalence and characteristics of avoidant/restrictive food intake disorder in a cohort of young patients in day treatment for eating disorders. Journal of Eating Disorders, 2014, 2:21.
  30. British Dietetic Association (2016). Safe Staffing Safe Workload Guidance. https://www.bda.uk.com/uploads/assets/53c343b0-c925-4513-a5d6d08b9b24ba2a/Safe-Staffing-Workload-Guidance.pdf [Accessed June 2022]
  31. NHS England and NHS Improvement (2019). Job planning the clinical workforce – allied health professionals - A best practice guide. https://www.england.nhs.uk/ahp/allied-health-professionals-job-planning-abest-practice-guide/ [Accessed June 2022]

Authors and acknowledgements

Angharad Banner: Highly Specialist Paediatric & CAMHS Dietitian at Cwm Taf Morgannwg Health Board. Freelance Dietitian & Public Relations Officer of the Paediatric Specialist Group of the BDA.

Paola Falcoski: Advanced Specialist Eating Disorder Dietitian, Bedfordshire & Luton CAMHS Eating Disorders Team. Freelance Dietitian.

Claire Knight: Clinical Lead Dietitian for Nottingham Child & Adolescent Eating Disorder Service. Chair of the BDA Specialist Interest Group for CAMHS. Project Lead NHS England ARFID Pilot Study for the Midlands Region 2019/2020.

Dr Elizabeth Roberts: Advanced Specialist Eating Disorders Dietitian, Somerset NHS Foundation Trust.

Michelle Simpson: Lead Specialist Paediatric Eating Disorders Dietitian, Hampshire CAMHS Eating Disorders Team.

Sian Taylor: Clinical Lead Dietitian & Operations Manager, CAMHS, Aneurin Bevan Health Board. Chair of the ARFID All Age Specialist Interest Group (ARFID SIG).

Clare Thornton-Wood: Paediatric Dietitian - Clinical Dietetic Lead Feeding and Eating Disorders at Great Ormond Street Hospital for Children NHS Foundation Trust. BDA Media Spokesperson.

Mala Watts: Specialist Paediatric Eating Disorder Dietitian, Buckinghamshire Eating Disorder Service, Oxford Health NHS Foundation Trust. Education Lead ARFID SIG. Freelance Dietitian.

This position paper has been written by members of the ARFID Special Interest Group (ARFID SIG). The ARFID SIG is part of the British Dietetic Association (BDA) CAMHS sub-group of the Mental Health SIG. The authors collaborated with members of the Paediatric Specialist Group. ARFID Awareness UK (AAUK) were also consulted (AAUK) to include the voice of patients and carers.

The need for a position paper came about from the recognition of ARFID as an eating disorder in both the DSM-5 criteria and ICD11 in 2013 and 2022 respectively. This position paper has focused on Children and Young People (CYP).

A group of dedicated and highly specialist dietitians in eating disorders and paediatrics UK wide convened. The draft was circulated to specialist ARFID colleagues including paediatricians, psychologists, and dietitians.

Our acknowledgements go to Glenn Waller, Rosan Meyer, Luise Marino, Rachel Bryant-Waugh, Damien Wood, Gillian Harris, Susan Meredith and ARFID Awareness UK.

BDA ARFID Position Statement_logos.pdf 1.15MB
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