The SNOW-P programme, which stands for Supporting Nutrition and Optimising Wellbeing Programme, was co-constructed with carers of young boys with Duchenne muscular dystrophy. Fifty-three of them responded to a survey:
- 48% thought their son was overweight, which led to complexes (71%) and a negative impact on his self-esteem (64%) and mobility (57%);
- although healthy eating was an important priority for the families, lack of time to prepare meals, refusal to eat certain foods, increased appetite linked to corticosteroids and lack of information on nutrition were the main barriers to its implementation;
- an intensive six-week programme covering appetite management and screen time was preferred.
In order to assess its feasibility and acceptability, this programme was implemented via weekly teleconsultation over six weeks with eight boys suffering from Duchenne muscular dystrophy with a body mass index above the 95th percentile and a median age of 11.4 years:
- seven completed the programme;
- their follow-up rate ranged from 88% to 100%;
- most of them were very satisfied and found it easy to take part in the programme;
- after 6 weeks, the participants’ average weight curve followed that of children of the same age.
Given the inaccurate feedback from carers on waist circumference measurements and food diaries, the authors conclude that a hybrid face-to-face and distance programme would be useful in assessing the effectiveness of such an approach.
