Rachel A Kennedy, Marlena Klaic, Gabrielle Donlevy, Kate Carroll, Paula Bray, Eppie M Yiu, Zoe E Davidson
Sixty-four surveys were received; 50/64 (84%) worked in metropolitan areas, 44/64 (69%) were allied health professionals and 35/64 (55%) had less than 5 years' experience in neuromuscular disorders. Sixty participants provided responses about guideline awareness. Awareness was 67% (n = 40/60)-DMD diagnosis and management care considerations, 42% (n = 25/60)-Clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy and 33% (n = 20/60)-Clinical practice guideline for the management of paediatric Charcot-Marie-Tooth disease. Those who were aware of the guidelines felt that they influenced their practice. Self-reported adherence to evidence-based assessments in Duchenne muscular dystrophy ranged from 24% (use of dynamometry) to 90% (not using skinfolds). Twenty-four (24/64; 38%) respondents managed paediatric Charcot-Marie-Tooth and most recommended exercise and physical activity for management of Charcot-Marie-Tooth-related impairments.
BACKGROUND AND PURPOSE: There is limited evidence describing awareness and adherence to clinical practice guidelines for neuromuscular disorders. This study aimed to assess awareness of and self-reported adherence to clinical practice guidelines for neuromuscular disorders among Australian and New Zealand health professionals.
METHODS: A cross-sectional survey of health professionals working with individuals with neuromuscular disorders was conducted to describe awareness of three neuromuscular guidelines. Self-reported adherence to recommendations for allied health assessments in Duchenne muscular dystrophy and exercise and physical activity in paediatric Charcot-Marie-Tooth was also assessed.
RESULTS: Sixty-four surveys were received; 50/64 (84%) worked in metropolitan areas, 44/64 (69%) were allied health professionals and 35/64 (55%) had less than 5 years' experience in neuromuscular disorders. Sixty participants provided responses about guideline awareness. Awareness was 67% (n = 40/60)-DMD diagnosis and management care considerations, 42% (n = 25/60)-Clinical practice guidelines for allied health and nursing assessment and management of Duchenne muscular dystrophy and 33% (n = 20/60)-Clinical practice guideline for the management of paediatric Charcot-Marie-Tooth disease. Those who were aware of the guidelines felt that they influenced their practice. Self-reported adherence to evidence-based assessments in Duchenne muscular dystrophy ranged from 24% (use of dynamometry) to 90% (not using skinfolds). Twenty-four (24/64; 38%) respondents managed paediatric Charcot-Marie-Tooth and most recommended exercise and physical activity for management of Charcot-Marie-Tooth-related impairments.
DISCUSSION: This study provides insights into guideline self-reported adherence among Australian and New Zealand health professionals treating individuals with neuromuscular disorders. Targeted strategies to increase guideline awareness and adherence are vital to ensure standardised and equitable care in readiness for prospective disease-modifying therapies.