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Bone strength is known to be reduced in various neuromuscular disorders (NMDs). In this study, the awareness and practice of bone strength management in NMDs among clinicians and patients were assessed. Two online surveys were conducted: one among health care providers (HCPs) of the European Reference Network for Neuromuscular Disorders (ERN EURO-NMD) and another among patients.
The survey of 52 HCPs indicated that awareness of potentially impaired bone strength in people with NMDs was reasonable to good. It was reported that bone fractures were often or almost always inquired about during history-taking (81%). However, bone strength was assessed less frequently, with evaluations being often or almost always performed at diagnosis (50%) and at follow-up (58%). Medical training on this topic was considered poor to very poor by 50% of HCPs. Prevention and treatment of reduced bone strength were found to be variable, and multidisciplinary care was deemed suboptimal.
The survey of 581 patients provided additional important insights. Many patients were followed up outside ERN EURO-NMD centers, and treatment approaches varied. These parallel surveys offered a broad perspective on the awareness and management of bone strength in individuals with NMDs. The findings are expected to enhance the recognition of this important aspect of NMD care and to guide future research priorities and care guidelines.
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