P.277 - Myd & Eat: a multidisciplinary intervention for myotonic dystrophy regarding food intake and nutrition

Abstract

Myotonic dystrophy (MD) patients may experience dysphagia, gastrointestinal symptoms, diminished initiative, motor impairments and fatigue affecting activities of daily life. A qualitative study was carried out using a semi structured interview on experiences with eating, drinking, nutrition and meal preparation. Nine MD patients and caregivers participated. Analysis showed difficulties with social aspects of eating, gastrointestinal problems, weight changes, fatigue, motor impairments, and reduced involvement in preparing meals. Caregivers reported fear of choking, increased time needed for eating, social embarrassment and inability to speak during meals. Both patients and caregivers would appreciate instructions on all aspects of food intake, nutrition and meal preparation. These findings resulted in the development of a multidisciplinary program by a dietician, speech-language and occupational therapist. This program included four group sessions. A pilot study was carried out using a mixed methods approach with semi structured interviews and discipline-specific outcome measures. Patients highly appreciated peer support, the dedication and multidisciplinary approach of therapists and information on how MD relates to food intake, nutrition and preparing meals. They experienced the intervention as a preventive more than a changing behaviour program. The outcome measures did not show a change in diet. On swallowing outcome, two patients had a positive and one had a negative change and two patients had no change. On occupational performance of activities related to eating and drinking, three patients reported a higher performance and four reported more satisfaction of performance. In conclusion, MD patients and caregivers experience issues related to food intake and nutrition, mostly related to healthy food, swallowing, fear for choking, preparing meals and social aspects of eating. This study provides a first experience with a multidisciplinary intervention regarding food intake and nutrition in MD patients.