Growth assessment and weight management in paediatric neuromuscular clinics: a cross-sectional survey across Canada

Purpose: To identify current practices related to the assessment, monitoring and discussion of bodyweight, growth and obesity in neuromuscular clinics for children with Duchenne muscular dystrophy (DMD). Methods: A cross-sectional, online survey was distributed using snowball sampling to healthcare providers working with children with DMD across Canadian neuromuscular clinics. Summary and descriptive statistics were calculated. Content analysis was performed on open text responses. Results: Thirty-seven responses were received, representing a range of healthcare disciplines. Height and weight were routinely assessed by 32/37 (87%) respondents, although only 21/37 (57%) responses reported having a clinic standard for measuring height and 23/37 (62%) for weight. While 32/36 (89%) reported discussing weight during consultations, only 13/37 (35%) felt confident doing so. Dietitians were considered the most appropriate person to discuss and manage weight with children and families, although only 17/37 (46%) reported having a dietitian involved in their clinic. Conclusions: Neuromuscular clinics could benefit from implementing consistent and recommended growth assessment practices. The development of evidence-based tools, training and protocols tailored to Duchenne muscular dystrophy should be a priority.

Automated summary

The study found that while height and weight are routinely assessed in neuromuscular clinics for children with DMD, there is a lack of standardized measurement methods and confidence in discussing weight. Involving dietitians in clinics and developing evidence-based tools tailored to DMD should be a priority to improve growth assessment practices.