Dr Dasha Nicholls,
Reader in Child and Adolescent Psychiatry,
Division of Psychiatry,
Imperial College London,
Du Cane Road,
London W12 0NN
About the study
Avoidant/Restrictive Food Intake Disorder (ARFID) is 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 to the extent that these restrictive eating patterns result in significant health problems, including weight loss, poor growth, nutritional deficits or poor social and emotional wellbeing. It differs from other eating disorders in that people with ARFID don’t restrict their food intake for the specific purpose of losing weight; rather food avoidance may be based on lack of interest in food, the sensory characteristics of food and/or anxiety about food such as fear of choking or other aversive consequences of eating. ARFID replaces previous terms including ‘Feeding Disorder of Infancy or Early Childhood’.
Little is known about how this disorder presents in different settings, the physical and mental health problems it is associated with, and the outcomes in British children and adolescents, all questions of great international interest.
By using questionnaires sent to paediatricians and psychiatrists through the British Paediatric Surveillance Unit (BPSU) and the Child and Adolescent Psychiatric Surveillance system (CAPSS), this study aims to establish incidence rates of ARFID presenting to secondary health care, referral pathways, patterns of presentation, and clinical features.
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 we hope will prompt further research into information on prognosis, long-term outcomes and treatment of ARFID.
Any child or adolescent aged 5 to 15 years with persistent restriction of quantity and/or range of food intake, associated with one or both of the following:
- Nutritional deficiency that requires additional clinical investigation or treatment (e.g. weight loss or poor growth, micronutrient deficiency, reliance on nutritional supplementation, anaemia) that is not fully accounted for by poverty or neglect, cultural practice or an existing medical condition or another mental disorder*
- Interference with day-to-day functioning due to eating behaviour (e.g. unable to eat at school or with peers, needs to take preferred foods when out of home).
Not explained by any of the following:
- Lack of available food (e.g. from poverty, famine or neglect)
- Culturally sanctioned practice (e.g. endorsed religious and cultural practice)
- Other known diagnosis
- e.g. Allergy to specific food group (e.g. dairy)
- Gastrointestinal disorder
- Swallowing difficulties
- Other eating disorder e.g. anorexia nervosa, bulimia nervosa
- Other medical or psychiatric disorder that fully explains food restriction (not requiring additional clinical attention) e.g. depression, anxiety, OCD, malignancy, diabetes mellitus, inflammatory bowel disease, thyroid disease
*If eating disturbance occurs in the context of another condition/disorder, then in order to meet case definition for ARFID, the severity of eating disturbance should exceed that routinely associated with the particular condition/disorder - and warrant additional clinical attention.
Please report any child seen in the last month who meets the case definition in the UK or the Republic of Ireland.
March 2021 - March 2022 (13-months of surveillance) with a 1-year follow-up.
Former EMS Limited (charity number 1098725, registered Oct. 9th 2017) is funding this study.
This study has 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).
Imperial College London is the sponsor and data controller for this research study. To contact the Data Protection Officer at Imperial College London can be contacted firstname.lastname@example.org or email@example.com.
The study team at Imperial College London will use information from medical records for a medical research study. The lawful basis for collecting and using personal information in this study is article 6(1)(e) and article 9(2)(j) of the GDPR which allows us to process personal data when it is for scientific research in the public interest. We will collect information about term babies who are resuscitated term babies with no heart rate detected at 10 minutes of age from the doctors who are looking after them. Doctors will not provide identifying information like names and addresses, but they will provide personal information like sex, ethnic group and date of birth. The smallest amount of personal information will be used. We cannot withdraw or remove information from the study but personal information will be deleted or de-personalised when the study finishes. Imperial College London will securely store this information for 20 years.
If you want access to the information in your child’s NHS records, then you should contact your child’s NHS hospital/doctor.
If you want to find out more about how personal information is used in the study, please contact firstname.lastname@example.org
If you wish to complain about the use of your personal information, then you should contact the Information Commissioner’s Office:
Information Commissioner’s Office
Cheshire SK9 5AF
Helpline number: 0303 123 1113