Endocrine Abstracts

Introduction: People living with Type 1 Diabetes (T1D) have a lifetime risk of disordered eating behaviours (DEB) and increased psychological distress, morbidity and mortality. Associated complications of DEB are often associated with undernutrition, however obesity is a significant co-morbidity of DEB. Expert opinion and pre-hypothesised understanding informs much of our understanding of the development and maintenance of and DEB in T1D with little input from those with lived experience.

Objectives: To understand perspectives of the lived experiences of the development and maintenance of DEB in T1D in paediatric diabetes care to inform future prevention strategies.

Methods: Participants were recruited via Diabetes UK patient groups and diabetes online community (@preventT1DE). Eligible participants (lived experience of eating disorder/disordered eating and childhood diagnosis of diabetes) were invited to take part in semi-structured interviews exploring their childhood, diabetes journey and disordered eating journey. Interviews were analysed using thematic analysis.

Results: 11 interviews completed (1 male, 10 female).

Age of diagnosis 2 - 14 years (mean = 7.7 years).

Connection P29 ‘My Mum\..she didn’t really know how to show love’

Shame P14 ‘because she’d find the wrappers and things were missing. But I still did it’

Limitations of diabetes P12 ‘I was not allowed\.. cakes\.. or sweets\.\. or biscuits.’

Change ‘ P33 it was made even worse because I turned up in adult clinic for diabetes. I was, I think, 17 years old when they transferred me over to adult clinic.’

Acceptance P14 ’I’m realizing that actually my\..my thoughts and and my diabetes are not separate’

Control P27 ’I felt like I had no control over anything and that was the easiest thing I could control’

Support P36 ’ There was never any kind of support’

Identity P27 ’I think back on that [the eating disorder] now and it makes me really sad because that’s not the kind of person I am. It’s not.

Discussion: The insights of those with lived experience offers potential for prevention and early intervention in clinical practice.

Conclusions: A holistic and psychologically informed approach to patient care alongside family based interventions and peer support are likely to be important clinical adaptations to prevent DEB in children and young people with T1D.