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#apaperaday: Pilot study of a virtual weight management program for Duchenne muscular dystrophy

In today’s #apaperaday, Prof. Aartsma-Rus reads and comments on the paper titled: Pilot study of a virtual weight management program for Duchenne muscular dystrophy

With a Yuzu in her food box picture due to the theme of the pick: a publication on caregivers attitudes on nutrition and weight management in Duchenne from muscle & nerve by Billich @davidson_zoe and others. DOI: 10.1002/mus.28065

About 50% of Duchenne patients are overweight. This is a concern as this will have an impact on muscle function, heart and respiratory pathology, increase the risk of fractures, but also often lead to a negative self image.

Maintaining a healthy weight is challenging for Duchenne patients because they are less active, have less resting energy due to reduced muscle and have increased appetite due to steroids. Authors did a survey to obtain caregivers’ perspective on nutrition and weight.

79 Australian caregivers replied & 53 of the surveys were fully filled out. These caregivers cared for 56 Duchenne patients. 96% were on steroids. 48% of Duchenne patients were overweight and 40% of caregivers of the overweight patients wanted to lose weight but it was difficult.

A third of the patients were picky eaters. Most caregivers knew what ‘core food groups’ were and indicated healthy eating is important, but some indicate they would benefit from education on this and also to learn how to prepare healthy food with limited time and budget.

Patients were more inclined to eat unhealthy food during social events, and also have increased appetites due to the steroids and when they were emotional. During family meals patients were inclined to eat healthier and consume less soda.

Caregivers indicated they would like to have a short, individualized lifestyle course to teach about healthy food but also offering coping for emotional issues and self esteem. This course was preferred online or face to face by 50% each.

The food plan would have to be individualized due to the high number of picky eaters, refusing to eat certain textures. Authors discuss that weight is a difficult topic to discuss and the importance of individualizing advice. Psychological support is important.

Caregivers also indicated that they find it difficult to deny their sons food due to the Duchenne diagnoses, and feel guilty when they do not allow them (unhealthy) food. They prefer the happiness the food brings their sons even knowing that in the long term this is not good.

Authors stress the fact that families have limited time. The limitation of the study was that the surveys were only in English and in one country and that the respondents might have been more interested in nutrition and therefore responded.

The good news is that based on this survey authors have started a Supporting Nutrition and Optimizing Wellbeing Programme (SNOW-P) for Duchenne families. Looking forward to updates about that.