Understanding the Early Life Risk Factors of Avoidant Restrictive Food Intake Disorder (ARFID) From a Lived Experience Perspective

ARFID is an eating/feeding disorder mainly affecting children, characterised by fear and anxiety about eating or food, without any concerns about body size/shape. The disorder was recognised a decade ago but has so far received very little research attention and is extremely poorly understood. Up to 1 in 4 children receiving treatment for eating disorders are estimated to have ARFID; and up to 1 in 7 children in the wider community.  

There is an urgent need to identify early life risk factors for ARFID to recognise infants and children who are at high risk and inform early prevention and intervention efforts.

The project

The objective of this research is to examine the extent to which mental health difficulties and neurodevelopmental conditions co-occur with ARFID.

Dr Nas and her team will work in partnership with families with lived experience to co-develop a practical evidence-based tool for easy early identification of children at risk for ARFID.  In this project, families who are directly affected by ARFID will lead the way by co-designing the entire research programme – from deciding on the questions that need to be answered, helping the researchers to carry out the study and helping to explain the findings to other families affected by ARFID.

The process

As well as working with caregivers, and individuals with ARFID, Dr Nas will also be undertaking secondary analyses of Gemini, a large population-based British birth cohort of 2402 families with twins (n=4804). It is the largest twin study ever set up to examine genetic and environmental influences on early growth with detailed information on early life health problems (such as tube-feeding, days spent in special care), infant milk-feeding and appetite, and has one of the largest and richest dietary datasets for toddlers in the UK (exceeding that of the National Diet and Nutrition Survey at that age). Importantly, it is one of the few datasets that has characterised ARFID and other mental health and neuroatypicality symptoms.

The potential

In the short-term, this project will publish work on the quantitative and qualitative research conducted, and to bring awareness to the role of lived experience in ARFID. Beyond this, we aim to develop a screening tool that could aid healthcare professionals in diagnosing ARFID; and, therefore, reduce waiting and referral times and the overall cost to the NHS.