Incidence of ARFID in children and young people in the UK and Ireland
Research type
Research Study
Full title
Incidence of Avoidant/Restrictive Food Intake Disorder (ARFID) in children and young people presenting to secondary care in the UK and Ireland
IRAS ID
273665
Contact name
Dasha Nicholls
Contact email
Sponsor organisation
Imperial College London
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Research Summary
Avoidant/Restrictive Food Intake Disorder (ARFID) is a serious disorder introduced as a new mental and behavioural disorder diagnosis in 2013. It is an umbrella term used to describe restrictive eating patterns which result in significant health problems, including weight loss, poor growth, nutritional deficits or poor emotional wellbeing. Unlike in Anorexia Nervosa, restrictive eating in ARFID is not associated with concerns about body image, weight or shape. It is known that comorbid anxiety and Autism Spectrum Disorder are common among those with ARFID and that some ARFID features are a risk factor for the development of Anorexia Nervosa (as some ARFID patients will transition to that diagnosis during treatment). To date very little is known about this disorder and its associated behaviours and outcomes in British and Irish children and adolescents and, as a new diagnosis, it is of great international interest. Given the impact on the lives of patients and families, there is a clear need for a prospective study of new cases to examine the current pattern of ARFID, raise awareness and inform the planning of services.
By using questionnaires sent to paediatricians through the British Paediatric Surveillance Unit (BPSU) and psychiatrists through the Child and Adolescent Psychiatric Surveillance system (CAPSS), this study aims to establish incidence rates (number of new cases) of ARFID presenting to secondary health care, referral pathways, patterns of presentation, and clinical features (eating behaviours, medical complications and the types of medical or psychiatric presentations it is associated with).
This will allow us to compare rates, presentation and management of ARFID with other countries, as well as generating new priority research questions that could in turn inform decision making to better match patient need with sufficient funding allocations. Study results should prompt further research into information on prognosis, long-term outcomes and treatment of ARFID.Summary of Results
Incidence of Avoidant/Restrictive Food Intake Disorder (ARFID) in children and young people presenting to secondary care in the UK and IrelandEnd of Study Report
2025Principal Investigator: Professor Dasha Nicholls, Imperial College London
Contributors: Javier Sanchez-Cerezo, Josephine Neale, Richard Lynn, Lee Hudson, Nikita Julius, Ellaha Haidar, Lidushi Nagularaj, Tim Croudace
Funded by: The Former EMS Ltd (charity number 1098725, registered Oct. 9th 2017)
Background
The study aimed to collect data on Avoidant/Restrictive Food Intake Disorder (ARFID), a psychiatric disorder introduced as a new 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 feelings of fear and anxiety around food. It differs from other eating disorders in that people with ARFID don’t restrict their food intake for the specific purpose of losing weight, and avoidance is based on the sensory characteristics of food (such as smell, taste, texture) and/or concern about aversive consequences of eating (such as fear of choking/vomiting). At the start of the study, very little was known about this disorder and its associated behaviours and outcomes in children and adolescents.
Knowledge about the epidemiology of a disorder is fundamental to understanding the needs for clinical service provision and to identify populations at risk. ARFID is a disorder of growing significant scientific interest within the UK and Ireland, as well as internationally. This study aimed to advance the knowledge of ARFID by determining how many children and adolescents are presenting with ARFID symptoms to paediatric secondary healthcare in the UK and Ireland, in addition to gathering information about whom they are being referred to for treatment and which services are taking responsibility for this treatment. By determining this, this study could radically change the degree of help that affected children and their families receive by ensuring standardized intervention, treatment paths and care. At time of designing the study, many patients with ARFID fell between local paediatric, child and adolescent mental health services (CAMHS) and local hospital dieticians and pediatricians where more often than not, there was little to no understanding about ARFID; and dedicated feeding disorder clinics at larger teaching hospitals where ARFID is understood.
Methods
We undertook an observational surveillance study in collaboration with the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatry Surveillance System (CAPSS). These surveillance systems work by sending monthly electronic reporting ecards listing health conditions currently under study to all consultant paediatricians (BPSU) and consultant child and adolescent psychiatrists (CAPSS) in the UK and Ireland. The reporting ecards are returned to the surveillance systems who inform the research team when a clinician reports a case. Reports of no case provide the denominator. A questionnaire is then sent to the reporting clinician for further details about the case. BPSU surveyed 4298 consultant paediatricians and CAPSS surveyed 695 consultant child and adolescent psychiatrist during the study period.
We developed the surveillance case definition, which was approved by both BPSU and CAPSS committees based on modified DSM-5 diagnostic criteria for ARFID, and was included in the monthly ecard sent to consultant paediatricians and child and adolescent psychiatrists. This surveillance case definition was purposely broad to ensure that all cases were recognised and reported. We confirmed the cases of ARFID by using the analytic case definition (a more detailed case definition used by the study team) after reporting clinicians completed a questionnaire with details of the case. In any unclear cases, we reached a consensus between the study team on whether the criteria for ARFID had been met.
We ascertained newly diagnosed cases of ARFID over a 13-month period (from 1st of March 2021 to 31st of March 2022), as is customary with surveillance studies. Follow-up took the form of data collection at 12 months after a case of ARFID was reported through a second questionnaire sent to reporting clinicians. We collected and managed study data by using Research Electronic Data Capture (REDCap); a secure, web-based software platform hosted at Imperial College London.
Ethics Approval
This study was been approved by Black Country Research Ethics Committee (reference: 20/WM/0256); HRA Confidentiality Advisory Group (reference: 20/CAG/0120); and Public Benefit and Privacy Panel for Health and Social Care (reference: 2021-0113).
Key Findings
i. What is the incidence of ARFID in children and adolescents presenting to paediatricians in the UK and Ireland?
• We identified 319 children and adolescents with ARFID aged 5-17 years
• The observed incidence rate in the UK was 2.79 per 100 000 young people, with a higher observed incident rate in males (2.98 per 100 000 young people) than in females (2.58 per 100 000 young people)
• The observed incidence rate in Ireland was 0.73 per 100 000 young people
• Of the 319 cases, 174 were male (54.5%); 145 were female (45.5%)
• Mean age 11.2 years (standard deviation = 3.8; range 5.00 – 17.99)
• Majority white ethnicity (n = 248; 77.8%)
• 265 cases were reported from England, seven from Wales, 13 from Scotland, seven from Northern Ireland, six from ROI, and one each from Jersey and the Isle of Manii. What are the referral pathways for children and adolescents with ARFID?
• Of 319 cases, 189 reports were from paediatricians and 130 from child and adolescent psychiatrists
• Only 4 confirmed cases were reported by both paediatricians and psychiatrists
• Referrals presenting to paediatricians were younger, more often male, had more chronic symptoms due to lack of food variety, and were more likely to have associated autism spectrum disorder
• Referrals presenting to psychiatrists were more likely to have an acute clinical presentation, with more weight loss, characterised by more fear of aversive consequences of eating, and were more likely to have associated anxietyiii. What are the clinical features (including comorbidities) of children and adolescents with ARFID?
• Latent class analysis revealed four distinct classes: Fear subtype, Lack of interest subtype, Sensory subtype and Combined subtype
• The Combined subtype, a mixed presentation, was most common
• Age at diagnosis, sex, weight loss, distress associated with eating, and autism spectrum disorder diagnosis were identified as predictor of class membership
• Comorbidity with anxiety and autism spectrum disorder was common
• 53.4% of cases were of normal weight, 34.2% were underweight and 12.3% were overweight or obese at presentation
• Constipation was the most prevalent medical feature (21.9%), followed by dizziness (17.6%), bradycardia (14.4%) and muscle wasting (8.2%)
• Where menstrual status was reported (in 28 of 145 females), 35.7% documented secondary amenorrhoeaiv. What are the current management plans for children and adolescents with ARFID?
• Medical monitoring, dietetic advice, nutritional supplements and tube feeding (all more common in those seen by paediatricians)
• Psychoeducation (more common in those seen by psychiatrists)
• Multidisciplinary team input, including dietitians, occupational therapists and psychologists
• 11.6% were admitted to a paediatric inpatient unit or day care and 3.6% were admitted to a psychiatric inpatient unit or day carev. What are the outcomes at 1 year follow-up for children and adolescents with ARFID?
• At follow-up, the sample consisted of 109 males (55.3%) and 88 females (44.7%). According to the reporting clinicians’ overall clinical impression, 19 cases (9.6%) improved without treatment, 89 cases (45.2%) improved with treatment, 5 cases (2.5%) changed in presentation, 46 cases (23.4%) persisted unchanged, 6 cases (3%) worsened and for 32 cases (16.2%) the reporting clinicians reported that outcome was unknownvi. How does the incidence of ARFID in children and adolescents presenting to secondary health care in the UK and Ireland compare with rates from Canada and other countries?
• One only other study has reported national incidence, in Canada, which found an incidence of ARFID of 2.02 per 100 000 young people aged 5 – 18 years presenting to paediatriciansDissemination of Findings:
Publications:
Sanchez-Cerezo, J., Neale, J., Julius, N., Lynn, R. M., Hudson, L. D., & Nicholls, D. (2024). Incidence of avoidant/restrictive food intake disorder in children and adolescents: a BPSU and CAPSS surveillance study. BMJ Open, 14, e088129. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1136%252Fbmjopen-2024-088129%2FNBTI%2FRqe6AQ%2FAQ%2F28e087f0-b06e-4c8c-82dc-228a85589855%2F2%2FuuDA5dJ1o2&data=05%7C02%7Cblackcountry.rec%40hra.nhs.uk%7Cf68e11c25bf5457ff37b08dd331e7f78%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638722928251280210%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=JT2rT0MvWMpSY8Vj2HPLjzDLO56KBnfrrN2jKJVaA14%3D&reserved=0Haidar, E., Sanchez-Cerezo, J., Neale, J., Julius, N., Lynn, R. M., Hudson, L. D., & Nicholls, D. (2024). Comparison of clinical presentation and management of children and adolescents with ARFID between paediatrics and child and adolescent psychiatry: a prospective surveillance study. Archives of Disease in Childhood. Published Online first: 17 October 2024. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1136%252Farchdischild-2024-327032%2FNBTI%2FRqe6AQ%2FAQ%2F28e087f0-b06e-4c8c-82dc-228a85589855%2F3%2F1SIACmk7nA&data=05%7C02%7Cblackcountry.rec%40hra.nhs.uk%7Cf68e11c25bf5457ff37b08dd331e7f78%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638722928251292274%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=99cS4a7wGx%2B3%2FwP56L2EGxZRQRz3cKZzuMb4yAP0PYU%3D&reserved=0
Sanchez-Cerezo, J., Neale, J., Julius, N., Croudace, T., Lynn, R. M., Hudson, L. D., & Nicholls, D. (2024). A response to "Should children under 5 and those with constipation be overlooked from ARFID research?". EClinicalMedicine, 73, 102668. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1016%252Fj.eclinm.2024.102668%2FNBTI%2FRqe6AQ%2FAQ%2F28e087f0-b06e-4c8c-82dc-228a85589855%2F4%2Fb58Hy2ptkM&data=05%7C02%7Cblackcountry.rec%40hra.nhs.uk%7Cf68e11c25bf5457ff37b08dd331e7f78%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638722928251304121%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=hSM2Sy5ZhhvRInpcbDyp48KN9rlJlNsgx4xcNFD1wqU%3D&reserved=0
Sanchez-Cerezo, J., Neale, J., Julius, N., Croudace, T., Lynn, R. M., Hudson, L. D., & Nicholls, D. (2024). Subtypes of avoidant/restrictive food intake disorder in children and adolescents: a latent class analysis. EClinicalMedicine, 68, 102440. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1016%252Fj.eclinm.2024.102440%2FNBTI%2FRqe6AQ%2FAQ%2F28e087f0-b06e-4c8c-82dc-228a85589855%2F5%2FWjVsQEAwEO&data=05%7C02%7Cblackcountry.rec%40hra.nhs.uk%7Cf68e11c25bf5457ff37b08dd331e7f78%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638722928251315512%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=6pJLo2oYFJGsG9zbJ1tNeDW83mRNzQtqXkBJpTgHJA8%3D&reserved=0
Sanchez-Cerezo, J., Neale, J., Julius, N., Croudace, T., Lynn, R. M., Hudson, L. D., & Nicholls, D. (2024). Psychopharmacological management of avoidant/restrictive food intake disorder in children and adolescents: findings from a national surveillance study. Neuroscience Applied, 3, 103980.
Sanchez-Cerezo, J., Neale, J., Hudson, L., Lynn, R. M., Julius, N., Nicholls, D. A national surveillance study of ARFID in the UK and Ireland. Archives of Disease in Childhood 2023;108:A372.
Oral presentations:
A national surveillance study of ARFID in the UK and Ireland. Presented at: ICED, Academy of eating disorders, Washington, USA, 1-3 June 2023.La incidencia en niños y adolescentes del trastorno de evitación/restricción de la ingesta de alimentos en el Reino Unido y en Irlanda: un estudio de vigilancia (The incidence of avoidant/restrictive food intake disorder in children and adolescents in the UK and Ireland: a surveillance study). Presented at: 65 Congreso Nacional de AEPNYA (65th Congress of the Spanish Association of Child and Adolescent Psychiatry, Madrid, Spain, 15-17 June 2022).
Posters:
Sanchez-Cerezo, J., Neale, J., Hudson, L., Lynn, R.M., Julius, N., Nicholls, D. (2024) A national surveillance study of ARFID in the UK and Ireland. Poster presentation at ECNP Workshop for Early Career Scientists in Europe, Nice, 14-17 March.Sanchez-Cerezo, J., Neale, J., Hudson, L., Lynn, R.M., Julius, N., Nicholls, D. (2023) A national surveillance study of ARFID in the UK and Ireland. Poster presentation at RCPCH Conference, Glasgow, 23-25 May.
Sanchez-Cerezo, J., Neale, J., Hudson, L., Lynn, R.M., Julius, N., Nicholls, D. (2023) A national surveillance study of ARFID in the UK and Ireland. Poster presentation at RCPsych Faculty of Child and Adolescent Psychiatry Annual Conference, London, 21-22 September.
Webinars:
Understanding Eating Behaviour in Autistic People. Autistica. Live webinar and YouTube video. 9 May 2024.ARFID in Children and Young People Study - What did we learn? RCPCH-BPSU live webinar 4 December 2024.
Impact of the Research
We have presented data at national and international conferences, published in a range of journals and disseminated via posters and webinars, therefore:
• Highlighting the potential benefits of collaborative working and availability of psychological interventions in improving outcomes for children and young people with ARFID
• Informing service development for this patient group
• Allowing international comparisons
• Increasing awareness among the public and clinicians alike through the research and dissemination of the findings
• Understanding of which services certain subtypes of ARFID may be more likely to present to, or be referred to, influencing service provision
• Informing training needs of those clinicians working with young people with ARFID
• Guiding the development of evidence-based pathways for ARFID assessment and management to ensure they are tailored to the specific needs of each patient
• Adding to the building evidence base of ARFID and influencing future diagnostic classificationsFuture Research Recommendations
• We received feedback that data reporting has become much more difficult for time-poor clinicians, especially subsequent to the COVID-19 pandemic, so we would encourage more support for clinicians to report data in surveillance studies.
• Surveillance methodology is limited to cases seen in teams that have a consultant paediatrician or child and adolescent psychiatrist, so future research should consider how to account for young people with ARFID presenting to primary care, psychologists or allied healthcare professionals such as dietitians, in order to provide more robust data.
• Further surveillance studies of ARFID including younger children should be done which will help to better understand early presentations of this disorder.
• Data was collected using a questionnaire developed by the authors and diagnoses were not validated using a clinical instrument such as the Pica, ARFID, and Rumination Disorder Interview (PARDI); this should be considered in future research.
• Studies with adult samples provide a richness of data to better understand ARFID across the lifespan.
• In our study we used indicator variables based on the psychopathology of ARFID but future studies should investigate other ARFID subtypes not yet considered, such as a gastrointestinal subtype or a somatically-focused subtype.
Acknowledgements
Our thanks go to all the busy paediatricians and child and adolescent psychiatrists who participated in the surveillance and reported cases, and to the charities Autistica and ARFID Awareness UK for supporting the study.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
20/WM/0256
Date of REC Opinion
7 Oct 2020
REC opinion
Favourable Opinion