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More child psychiatrists and paediatricians are needed to contribute to the largest study on ARFID in the 5-17 age group to date, in the UK and Ireland.
A group of researchers at Imperial College London has launched a new year-long research study to collect data on Avoidant/Restrictive Food Intake Disorder (ARFID) in children and young people. By using questionnaires sent to paediatricians through the British Paediatric Surveillance Unit (BPSU) and child and adolescent ps
ychiatrists through the Child and Adolescent Psychiatric Surveillance system (CAPSS), the study aims to establish the number of new cases of ARFID presenting to secondary health care in the UK and Ireland. Despite having launched at the beginning of the year, researchers are struggling a bit with the number of clinicians reporting, so are hoping that by raising more awareness of the study, more clinicians will participate.
Positive impact on children and young people
“Very little is known about ARFID,” said Dr Josephine Neale, Study Co-ordinator and Honorary Clinical Research Fellow. “For this reason it has been excluded from national guidelines and commissioning guidance, which means young people and their families are experiencing differences in care depending on where they live. By gathering data we can advance our knowledge about how many children and young people are presenting with symptoms of ARFID and how their journey through health services looks. This could radically change the degree and consistency of help that affected children and their families are offered and by clinicians reporting they will directly contribute to that influence.”
Study information
Questionnaires are sent to paediatricians by the British Paediatric Surveillance Unit (BPSU) and to child and adolescent psychiatrists by the Child and Adolescent Psychiatry Surveillance System (CAPSS).
“We are willing to help clinical teams in any way to report,” added Dr Neale. “We know at this time that teams are stretched but it is imperative that we determine accurate figures in this study.”
The study is funded by Former EMS Limited (charity number 1098725, registered Oct. 9th 2017) and supported by Autistica and ARFID Awareness UK. The study will last for 13 months from March 2021 and will be taking place across England, Wales, Scotland, Northern Ireland and the Republic of Ireland.
Cases to report
Any child or adolescent aged 5 to 17 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. anaemia, micronutrient deficiency, weight loss or poor growth, reliance on nutritional supplementation) 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, extreme and frequent distress about eating). 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 o Constipation
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.
For more information contact: Dr Dasha Nicholls, Reader in Child and Adolescent Psychiatry and Principal Investigator, Division of Psychiatry, Imperial College London, Du Cane Road, London W12 0NN
Email: arfid.study@imperial.ac.uk
Website for paediatricians: www.rcpch.ac.uk/bpsu/ARFID
Website for child psychiatrists: https://www.rcpsych.ac.uk/improving-care/ccqi/research-andevaluation/current-research/capss/capss-studies