O57 Artificial nutrition use in hypermobile ehlers danlos syndrome: common with autonomic symptoms and disordered eating

Abstract

<h3>Introduction</h3> Patients with Hypermobile Ehlers Danlos Syndrome(hEDS) pose complex nutritional challenges which can result in commencing Artificial Nutrition(AN). The factors that influence this and the prevalence of associated complications remains unknown. <h3>Methods</h3> hEDS patients from the charity organisation Ehlers-Danlos Support UK and tertiary Neurogastroenterology clinics completed single-time point questionnaires regarding: co-morbidities, AN use and complications, Gastrointestinal Symptoms, Somatic symptoms, Autonomic symptoms(COMPASS) and Psychopathology( Visceral Sensitivity Index/Hospital Anxiety and Depression Score/SCOFF Questionnaire for eating disorders/NIAS for Avoidant Restrictive Food Intake Disorder(ARFID)). We used stepwise logistic regression to ascertain which factors were associated with the use of AN. <h3>Results</h3> 681 participants responded(median: 39 years(range: 16–76), 95% female). 49.0% reported PoTS, 33.6% MCAS and 17.3% eating disorders.25.3%(n=172) report previously receiving AN (oral supplementation:87.2%; enteral:50.5%; parenteral:41.9%) and 8.8%(n=60) were currently receiving AN. Use of AN was predicted by a high COMPASS(p&lt;0.001) and high NIAS(p&lt;0.001) but not with other comorbidities. Reported reasons for starting AN include low BMI(34.1%); significant weight loss(28.8%) and symptoms without weight loss(15.3%). Reported BMI at the time of starting AN was: low(&lt; 18.5) in 53.8%; healthy(18.5–24.9) in 28.0%; overweight(25.0–29.9) in 7.0%; and obese(&gt;30.0) in 11.2%. Only 60.5% report receiving dietetic advice and 17.6% psychologist advice prior to commencing AN. 87% of those with enteral tubes and 52.4% with lines had related complications(table 1). 68.1% of participants felt they tolerated AN well; 68.9% felt AN improved their quality of life and 60.5% were satisfied with their symptom progress on AN. <h3>Conclusions</h3> AN is associated with significant complications and the reported reasons for commencement are heterogenous, with a proportion of patients belonging to the overweight/obese categories. The association of AN with ARFID and autonomic symptoms, strongly qualifies these factors for closer examination in clinical decision-making.