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

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.

Authors

Institutions

Publication Details

Journal
Journal of the Neurological Sciences
Published
2025-02-07
DOI
https://doi.org/10.1016/j.jns.2025.123420
Citations
1
Primary Topic
Neurogenetic and Muscular Disorders Research
Type
article
Field-Weighted Citation Impact
1.63

Funders

Controls
|||
ALL TIME
JAN
FEB
MAR
APR
MAY
JUN
JUL
AUG
SEP
OCT
article

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

Marie Kruse, Sabrina Schlüter, Nicol Cornelia Voermans, Madelon Kroneman et al.
1 citations
Journal of the Neurological Sciences
Neurogenetic and Muscular Disorders Research
1.63
article

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

Marie Kruse, Sabrina Schlüter, Nicol Cornelia Voermans, Madelon Kroneman, M. de Visser, David R. Weber, Antimo Moretti, Leanne Marie Ward, I. de Groot, Teresinha Evangelista, B.A.S. Olde Dubbelink
article en
1 citations

Abstract

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.

Journal of the Neurological SciencesVol. 472
Hospital Sant Joan de Déu Barcelona (ES), Children's Hospital of Philadelphia (US), Innsbruck Medical University (AT), Radboud University Nijmegen (NL), University of Ottawa (CA), University of Groningen (NL), Universidade do Porto (PT), Universität Innsbruck (AT), University of Campania "Luigi Vanvitelli" (IT), Medical University of Warsaw (PL), Children's Hospital of Eastern Ontario (CA), University Hospital Bonn (DE), Leiden University Medical Center (NL), Maastricht University Medical Centre (NL), Akershus University Hospital (NO), Mater Dei Hospital (MT), Ghent University Hospital (BE), Ljubljana University Medical Centre (SI), Istituto Giannina Gaslini (IT), Hospital de Sant Pau (ES), Erasmus MC (NL), Erasmus Hospital (BE), Tartu University Hospital (EE), Hospital of Lithuanian University of Health Sciences Kaunas Clinics (LT), Agostino Gemelli University Polyclinic (IT), Radboud University Medical Center (NL), University Medical Center Utrecht (NL), University of Cyprus (CY), Sorbonne Université (FR), Ospedale Maggiore (IT), Azienda Universitaria Ospedaliera Consorziale - Policlinico Bari (IT), University Hospital in Motol (CZ), Antwerp University Hospital (BE), Azienda Socio Sanitaria Territoriale degli Spedali Civili di Brescia (IT), Institut de Myologie (FR), Children's Clinical University Hospital (LV), European Neuro Muscular Centre (NL), Samodzielny Publiczny Centralny Szpital Kliniczny (PL), Essen University Hospital (DE), Pitié-Salpêtrière Hospital (FR), Tirol Kliniken (AT), Bambino Gesù Children's Hospital (IT), St Anna Children's Hospital (AT), Tampere University Hospital (FI), University of Campania "Luigi Vanvitelli" (IT), Hospital de Santo António (PT), Vall d'Hebron Hospital Universitari (ES), Tampere University (FI), IRCCS Ospedale San Raffaele (IT), Friedrich Baur Stiftung (DE), Hôpital Raymond-Poincaré (FR), University and Rehabilitation Clinics Ulm (DE), Hôpital Pasteur (FR), Azienda Ospedale - Università Padova (IT), University Hospital Ulm (DE), Hôpital d'Hautepierre (FR), Fondazione IRCCS Istituto Neurologico Carlo Besta (IT), Azienda Ospedaliera Universitaria Pisana (IT), Charité - Universitätsmedizin Berlin (DE), University of Pennsylvania (US), Ludwig-Maximilians-Universität München (DE), University of Amsterdam (NL), KU Leuven (BE)
European Neuromuscular Centre
Openalex Percentile: Top 21%
Neurogenetic and Muscular Disorders Research
1.63
DOIOpen Access PDFOpenAlex
AI Navigator

Ask Laika to Summarize, Analyze, and Connect papers live on the map.

Summarize Papers & Methodologies

Extract key findings, datasets, and comparative methods across publications.

Benchmark Rankings & Visual Analytics

Rank top research institutions, authors, funders, topics, and journals by Field-Weighted Citation Impact (FWCI) and paper volume with instant charts.

Connect Distant Disciplines

Bridge topological clusters on the map to find hidden collaborative intersections.