Webinar reveals results of study on feeding and eating difficulties in children with rare genetic conditions

Researchers from the Centre for Neuropsychiatric Genetics and Genomics (CNGG) at Cardiff University and University College London (UCL) have presented findings of eating difficulties in children with rare genetic conditions.

The Intellectual Disability and Mental Health: Assessing the Genomic Impact on Neurodevelopment (IMAGINE ID) study has been trying to understand how rare genetic changes affect developmental, emotional and physical health of children and young people.

In this webinar, Dr Samuel Chawner (CNGG) and Dr Jeanne Wolstencroft (UCL) focused on feeding, eating and gastrointestinal issues faced by many children and young people with rare genetic conditions.

Over 2500 families took part in the IMAGINE-ID study, with 500 families visited in their homes for detailed assessments by the Cardiff Univeristy IMAGINE-ID team. This involved a holistic assessment of elements such as mental health , physical health, genetic and environmental data.

Dr Samuel Chawner outlined three main eating behaviours explored by the IMAGINE ID study:

1. Insatiable hunger: some children with rare genetic conditions might experience constant and insatiable hunger known as hyperphagia. This lack of satiety (or feeling full) often results in food-seeking behaviours.
2. Eating non-food items: some children may crave and consume non-food items such as hair or paint. If this continues for one month or more, this is a condition known as Pica.
3. Extreme fussiness: this is when a child avoids certain foods and maybe fearful of trying new foods.

Further, severe and long-term food restrictions can eventually be diagnosed as a serious clinical eating disorder known as avoidant restrictive food intake disorder (ARFID). Hyperphagia, Pica, Food Fussiness and ARFID were all found to be elevated in children with rare genetic conditions within the IMAGINE-ID study.

Dr Chawner and Dr Wolstencroft concluded the session with a huge thank you to the families for participating in the Imagine ID study.

Dr Chawner said: “It was great to speak at the Unique webinar on the important topic of childhood feeding and eating. We are working alongside colleagues in the National Centre for Mental Health to continue to better understand eating disorders like ARFID and how it can impact a person’s mental health and wellbeing."

Learn more

The National Centre for Mental Health is looking at the causes and triggers of ARFID. Sign up to the ARFID newsletter for updates.

Read more about the IMAGINE ID study.

This work was funded by the Medical Research Council, the Medical Research Foundation, and the Wellcome Trust.