Nutritional knowledge, attitudes and dietary behaviours amongst individuals with hypermobility

Introduction: Hypermobile Ehlers–Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) are hereditary connective tissue disorders involving joint hypermobility and coexisting multisystem symptoms, including gastrointestinal (GI) dysfunction and chronic fatigue. Research investigating nutritional knowledge, attitudes and behaviours (KAB) of individuals with hEDS/HSD does not exist, so this study aimed to objectively measure KAB and explore relationships between KAB, GI symptoms and fatigue. Methods: Adults with hEDS/HSD were invited to complete an anonymous online survey. Utilising quantitative methodology, nutritional KAB, GI severity and fatigue scores were collected using validated questionnaires and statistically analysed using IBM SPSS.

Multivariate regression explored relationships between KAB variables and GI scores, and Spearman-rho correlation analysis explored relationships between KAB and fatigue. Results: 536 participants completed the questionnaire. Total scores for KAB were high, particularly for attitude and knowledge, although lower for behaviour. The total fatigue severity score was high, whilst upper and lower GI symptom scores were mid-range. Strong positive correlations were identified between knowledge and attitude, knowledge and behaviour, and attitude and behaviour.

Behaviour contributed to predicting GI scores and small negative correlations were found between behaviour and GI symptom severity. There were no significant relationships between dietary KAB and fatigue. Conclusion: A focus on improved dietary behaviour, utilising specific nutrition education and guidance based on dietary aspects with lower scores, would be beneficial and may contribute to GI symptom management. A generalised nutritional strategy has been proposed, involving an integrated approach to diet, lifestyle and behaviour change to improve dietary KAB in the hEDS/HSD population.

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