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

Kód výsledku v 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>

Nalezeny alternativní kódy

RIV/00216208:11130/25:10496384

Výsledek na webu

<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>

Jazyk výsledku

angličtina

Název v původním jazyce

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

Popis výsledku v původním jazyce

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.

Název v anglickém jazyce

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

Popis výsledku anglicky

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.

Druh

J_imp - Článek v periodiku v databázi Web of Science

CEP obor

—

OECD FORD obor

30103 - Neurosciences (including psychophysiology)

Projekt

—

Návaznosti

I - Institucionalni podpora na dlouhodoby koncepcni rozvoj vyzkumne organizace

Rok uplatnění

2025

Kód důvěrnosti údajů

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

Název periodika

Journal of the Neurological Sciences

ISSN

0022-510X

e-ISSN

1878-5883

Svazek periodika

472

Číslo periodika v rámci svazku

May

Stát vydavatele periodika

NL - Nizozemsko

Počet stran výsledku

9

Strana od-do

123420

Kód UT WoS článku

001455191700001

EID výsledku v databázi Scopus

2-s2.0-105000801060