Awareness of bone strength in patients with neuromuscular disorders: ERN EURO-NMD clinician survey and European patient survey

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00064203%3A_____%2F25%3A10496384" target="_blank" >RIV/00064203:_____/25:10496384 - isvavai.cz</a>

Alternative codes found

RIV/00216208:11130/25:10496384

Result on the web

<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=HtSpS6H1q" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=HtSpS6H1q</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.1016/j.jns.2025.123420" target="_blank" >10.1016/j.jns.2025.123420</a>

Result language

angličtina

Original language name

Awareness of bone strength in patients with neuromuscular disorders: ERN EURO-NMD clinician survey and European patient survey

Original language description

Bone strength is reduced In various neuromuscular disorders (NMDs). We aimed to assess the awareness and practice of bone strength management in NDMs among clinicians and patients. We performed two online surveys; among health care providers (HCPs) of the European Reference Network for Neuromuscular Disorders (ERN EURO-NMD) and among patients. The survey among 52 HCPs showed that awareness of potentially impaired bone strength in people with NMDs was reasonable to good: the vast majority of HCPs asked often or almost always about bone fractures during history-taking (81 %). Bone strength was less often assessed: often or almost always at diagnosis (50 %) and at follow-up (58 %). Medical training on this topic was considered poor to very poor in 50 % of HCPs. Prevention and treatment of reduced bone strength was variable and multidisciplinary care was sub-optimal. The survey among 581 patients provided important additional insights. Many patients were followed-up outside ERN EURO-NMD centers and treatment was variable. These parallel surveys provided a broad view on the awareness and management of bone strength in people with NMDs. The findings are expected to increase the appreciation of this important aspect of NMD care, and direct future research foci and care guidelines.

Czech name

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Czech description

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Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

—

OECD FORD branch

30103 - Neurosciences (including psychophysiology)

Project

—

Continuities

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Publication year

2025

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

Journal of the Neurological Sciences

ISSN

0022-510X

e-ISSN

1878-5883

Volume of the periodical

472

Issue of the periodical within the volume

May

Country of publishing house

NL - THE KINGDOM OF THE NETHERLANDS

Number of pages

9

Pages from-to

123420

UT code for WoS article

001455191700001

EID of the result in the Scopus database

2-s2.0-105000801060