Myopathie à axe central : Questions médicales fréquentes
Nom anglais: Myopathy, Central Core
Descriptor UI:D020512
Tree Number:C10.668.491.550.300
Termes MeSH sélectionnés :
Needs Assessment
Questions fréquentes et termes MeSH associés
Diagnostic
5
#1
Comment diagnostique-t-on la myopathie à axe central ?
Le diagnostic repose sur l'examen clinique, l'électromyogramme et la biopsie musculaire.
MyopathieBiopsie musculaire
#2
Quels tests génétiques sont utilisés ?
Des tests génétiques peuvent identifier des mutations dans le gène RYR1, associé à cette myopathie.
Tests génétiquesRYR1
#3
Quels signes cliniques sont observés ?
On observe souvent une faiblesse musculaire proximale et des anomalies dans les biopsies musculaires.
Faiblesse musculaireBiopsie musculaire
#4
L'IRM est-elle utile pour le diagnostic ?
Oui, l'IRM peut montrer des anomalies musculaires caractéristiques de la myopathie à axe central.
IRMMyopathie
#5
Quel rôle joue l'historique familial ?
Un historique familial de myopathies peut orienter le diagnostic vers une origine génétique.
Antécédents familiauxMyopathie
Symptômes
5
#1
Quels sont les principaux symptômes ?
Les symptômes incluent faiblesse musculaire, fatigue et parfois des douleurs musculaires.
SymptômesFaiblesse musculaire
#2
La myopathie affecte-t-elle tous les muscles ?
Elle touche principalement les muscles proximaux, comme ceux des hanches et des épaules.
Muscles proximauxMyopathie
#3
Y a-t-il des symptômes respiratoires ?
Dans certains cas, la faiblesse musculaire peut affecter les muscles respiratoires.
Symptômes respiratoiresMyopathie
#4
Les symptômes varient-ils selon l'âge ?
Oui, les symptômes peuvent apparaître dès l'enfance ou à l'âge adulte, selon les cas.
Âge d'apparitionMyopathie
#5
Des troubles de la marche sont-ils fréquents ?
Oui, la faiblesse musculaire peut entraîner des difficultés à marcher ou à se lever.
Troubles de la marcheFaiblesse musculaire
Prévention
5
#1
Peut-on prévenir la myopathie à axe central ?
Étant génétique, il n'existe pas de prévention, mais un diagnostic précoce aide à la gestion.
PréventionDiagnostic précoce
#2
Le dépistage est-il recommandé ?
Le dépistage génétique peut être conseillé pour les familles à risque de transmission.
DépistageTransmission génétique
#3
Des conseils de vie peuvent-ils aider ?
Des conseils sur l'exercice et la nutrition peuvent améliorer la qualité de vie des patients.
Conseils de vieQualité de vie
#4
Les activités physiques sont-elles bénéfiques ?
Des activités adaptées peuvent aider à maintenir la force musculaire et la mobilité.
Activités physiquesMobilité
#5
Les consultations régulières sont-elles nécessaires ?
Oui, des suivis réguliers permettent d'ajuster les traitements et surveiller l'évolution.
ConsultationsSuivi médical
Traitements
5
#1
Quels traitements sont disponibles ?
Il n'existe pas de traitement curatif, mais la physiothérapie aide à maintenir la force musculaire.
PhysiothérapieTraitement
#2
Les médicaments sont-ils efficaces ?
Des médicaments peuvent être prescrits pour gérer les symptômes, mais leur efficacité varie.
MédicamentsSymptômes
#3
La chirurgie est-elle une option ?
La chirurgie n'est généralement pas indiquée, sauf pour des complications spécifiques.
ChirurgieComplications
#4
Comment la rééducation aide-t-elle ?
La rééducation physique aide à améliorer la fonction musculaire et la qualité de vie.
RééducationQualité de vie
#5
Y a-t-il des traitements expérimentaux ?
Des essais cliniques explorent des thérapies géniques et des traitements ciblés.
Thérapie géniqueEssais cliniques
Complications
5
#1
Quelles complications peuvent survenir ?
Les complications incluent des problèmes respiratoires et des déformations musculo-squelettiques.
ComplicationsDéformations musculo-squelettiques
#2
La myopathie peut-elle affecter la vie quotidienne ?
Oui, la faiblesse musculaire peut limiter les activités quotidiennes et l'autonomie.
Vie quotidienneAutonomie
#3
Y a-t-il un risque de cardiomyopathie ?
Certaines formes de myopathie peuvent être associées à des problèmes cardiaques.
CardiomyopathieMyopathie
#4
Les infections sont-elles plus fréquentes ?
Les infections peuvent survenir en raison de la faiblesse musculaire et de l'immobilité.
InfectionsImmobilité
#5
Comment gérer les complications ?
Une prise en charge multidisciplinaire est essentielle pour gérer les complications.
Prise en chargeMultidisciplinaire
Facteurs de risque
5
#1
Quels sont les facteurs de risque génétiques ?
Les antécédents familiaux de myopathies augmentent le risque de développer cette maladie.
Facteurs de risqueAntécédents familiaux
#2
L'âge est-il un facteur de risque ?
L'âge d'apparition peut varier, mais les symptômes se manifestent souvent dans l'enfance.
ÂgeMyopathie
#3
Le sexe influence-t-il le risque ?
Les myopathies peuvent affecter les deux sexes, mais certaines formes sont plus fréquentes chez les hommes.
SexeMyopathie
#4
Des facteurs environnementaux jouent-ils un rôle ?
Actuellement, les facteurs environnementaux ne sont pas clairement établis comme des risques.
Facteurs environnementauxMyopathie
#5
Les maladies associées augmentent-elles le risque ?
Certaines maladies auto-immunes peuvent coexister avec la myopathie, mais leur lien n'est pas direct.
Maladies auto-immunesMyopathie
{
"@context": "https://schema.org",
"@graph": [
{
"@type": "MedicalWebPage",
"name": "Myopathie à axe central : Questions médicales les plus fréquentes",
"headline": "Myopathie à axe central : Comprendre les symptômes, diagnostics et traitements",
"description": "Guide complet et accessible sur les Myopathie à axe central : explications, diagnostics, traitements et prévention. Information médicale validée destinée aux patients.",
"datePublished": "2024-06-04",
"dateModified": "2025-03-01",
"inLanguage": "fr",
"medicalAudience": [
{
"@type": "MedicalAudience",
"name": "Grand public",
"audienceType": "Patient",
"healthCondition": {
"@type": "MedicalCondition",
"name": "Myopathie à axe central"
},
"suggestedMinAge": 18,
"suggestedGender": "unisex"
},
{
"@type": "MedicalAudience",
"name": "Médecins",
"audienceType": "Physician",
"geographicArea": {
"@type": "AdministrativeArea",
"name": "France"
}
},
{
"@type": "MedicalAudience",
"name": "Chercheurs",
"audienceType": "Researcher",
"geographicArea": {
"@type": "AdministrativeArea",
"name": "International"
}
}
],
"reviewedBy": {
"@type": "Person",
"name": "Dr Olivier Menir",
"jobTitle": "Expert en Médecine",
"description": "Expert en Médecine, Optimisation des Parcours de Soins et Révision Médicale",
"url": "/static/pages/docteur-olivier-menir.html",
"alumniOf": {
"@type": "EducationalOrganization",
"name": "Université Paris Descartes"
}
},
"isPartOf": {
"@type": "MedicalWebPage",
"name": "Myopathies congénitales structurales",
"url": "https://questionsmedicales.fr/mesh/D020914",
"about": {
"@type": "MedicalCondition",
"name": "Myopathies congénitales structurales",
"code": {
"@type": "MedicalCode",
"code": "D020914",
"codingSystem": "MeSH"
},
"identifier": {
"@type": "PropertyValue",
"propertyID": "MeSH Tree",
"value": "C10.668.491.550"
}
}
},
"about": {
"@type": "MedicalCondition",
"name": "Myopathie à axe central",
"alternateName": "Myopathy, Central Core",
"code": {
"@type": "MedicalCode",
"code": "D020512",
"codingSystem": "MeSH"
}
},
"author": [
{
"@type": "Person",
"name": "David Lacomis",
"url": "https://questionsmedicales.fr/author/David%20Lacomis",
"affiliation": {
"@type": "Organization",
"name": "Departments of Neurology and Pathology (Neuropathology), University of Pittsburgh School of Medicine, Pittsburgh, PA."
}
},
{
"@type": "Person",
"name": "Ichizo Nishino",
"url": "https://questionsmedicales.fr/author/Ichizo%20Nishino",
"affiliation": {
"@type": "Organization",
"name": "Department of Neuromuscular Research, National Center of Neurology and Psychiatry (NCNP), National Institute of Neuroscience, 4-1-1 Ogawahigashi, Tokyo 187-8502, Japan; Medical Genome Center, NCNP, Tokyo, Kodaira, Japan. Electronic address: nishino@ncnp.go.jp."
}
},
{
"@type": "Person",
"name": "John Rendu",
"url": "https://questionsmedicales.fr/author/John%20Rendu",
"affiliation": {
"@type": "Organization",
"name": "INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France."
}
},
{
"@type": "Person",
"name": "Julien Fauré",
"url": "https://questionsmedicales.fr/author/Julien%20Faur%C3%A9",
"affiliation": {
"@type": "Organization",
"name": "INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France."
}
},
{
"@type": "Person",
"name": "Satoru Noguchi",
"url": "https://questionsmedicales.fr/author/Satoru%20Noguchi",
"affiliation": {
"@type": "Organization",
"name": "Department of Neuromuscular Research, National Institute of Neuroscience, National Center of Neurology and Psychiatry, 187-8502 Tokyo, Japan; Department of Genome Medicine Development, Medical Genome Center, National Center of Neurology and Psychiatry, 187-8551 Tokyo, Japan."
}
}
],
"citation": [
{
"@type": "ScholarlyArticle",
"name": "The Needs Assessment: An Educator's First Step.",
"datePublished": "2024-01-24",
"url": "https://questionsmedicales.fr/article/38266200",
"identifier": {
"@type": "PropertyValue",
"propertyID": "DOI",
"value": "10.1097/ACM.0000000000005643"
}
},
{
"@type": "ScholarlyArticle",
"name": "Needs assessment of cancer survivors in Alaska.",
"datePublished": "2022-10-02",
"url": "https://questionsmedicales.fr/article/36183311",
"identifier": {
"@type": "PropertyValue",
"propertyID": "DOI",
"value": "10.1007/s10552-022-01636-0"
}
},
{
"@type": "ScholarlyArticle",
"name": "A Needs Assessment for the Future of Otolaryngology Education.",
"datePublished": "2023-01-29",
"url": "https://questionsmedicales.fr/article/36125895",
"identifier": {
"@type": "PropertyValue",
"propertyID": "DOI",
"value": "10.1177/01945998221128292"
}
},
{
"@type": "ScholarlyArticle",
"name": "[Needs assessment for the establishment of an Oral Therapy Unit].",
"datePublished": "2022-11-18",
"url": "https://questionsmedicales.fr/article/36411129",
"identifier": {
"@type": "PropertyValue",
"propertyID": "DOI",
"value": "10.1016/j.bulcan.2022.10.005"
}
},
{
"@type": "ScholarlyArticle",
"name": "A needs assessment for competency development of nurse educators.",
"datePublished": "2022-11-13",
"url": "https://questionsmedicales.fr/article/36371674",
"identifier": {
"@type": "PropertyValue",
"propertyID": "DOI",
"value": "10.1111/nuf.12844"
}
}
],
"breadcrumb": {
"@type": "BreadcrumbList",
"itemListElement": [
{
"@type": "ListItem",
"position": 1,
"name": "questionsmedicales.fr",
"item": "https://questionsmedicales.fr"
},
{
"@type": "ListItem",
"position": 2,
"name": "Maladies du système nerveux",
"item": "https://questionsmedicales.fr/mesh/D009422"
},
{
"@type": "ListItem",
"position": 3,
"name": "Maladies neuromusculaires",
"item": "https://questionsmedicales.fr/mesh/D009468"
},
{
"@type": "ListItem",
"position": 4,
"name": "Maladies musculaires",
"item": "https://questionsmedicales.fr/mesh/D009135"
},
{
"@type": "ListItem",
"position": 5,
"name": "Myopathies congénitales structurales",
"item": "https://questionsmedicales.fr/mesh/D020914"
},
{
"@type": "ListItem",
"position": 6,
"name": "Myopathie à axe central",
"item": "https://questionsmedicales.fr/mesh/D020512"
}
]
}
},
{
"@type": "MedicalWebPage",
"name": "Article complet : Myopathie à axe central - Questions et réponses",
"headline": "Questions et réponses médicales fréquentes sur Myopathie à axe central",
"description": "Une compilation de questions et réponses structurées, validées par des experts médicaux.",
"datePublished": "2025-05-19",
"inLanguage": "fr",
"hasPart": [
{
"@type": "MedicalWebPage",
"name": "Diagnostic",
"headline": "Diagnostic sur Myopathie à axe central",
"description": "Comment diagnostique-t-on la myopathie à axe central ?\nQuels tests génétiques sont utilisés ?\nQuels signes cliniques sont observés ?\nL'IRM est-elle utile pour le diagnostic ?\nQuel rôle joue l'historique familial ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-diagnostic"
},
{
"@type": "MedicalWebPage",
"name": "Symptômes",
"headline": "Symptômes sur Myopathie à axe central",
"description": "Quels sont les principaux symptômes ?\nLa myopathie affecte-t-elle tous les muscles ?\nY a-t-il des symptômes respiratoires ?\nLes symptômes varient-ils selon l'âge ?\nDes troubles de la marche sont-ils fréquents ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-symptômes"
},
{
"@type": "MedicalWebPage",
"name": "Prévention",
"headline": "Prévention sur Myopathie à axe central",
"description": "Peut-on prévenir la myopathie à axe central ?\nLe dépistage est-il recommandé ?\nDes conseils de vie peuvent-ils aider ?\nLes activités physiques sont-elles bénéfiques ?\nLes consultations régulières sont-elles nécessaires ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-prévention"
},
{
"@type": "MedicalWebPage",
"name": "Traitements",
"headline": "Traitements sur Myopathie à axe central",
"description": "Quels traitements sont disponibles ?\nLes médicaments sont-ils efficaces ?\nLa chirurgie est-elle une option ?\nComment la rééducation aide-t-elle ?\nY a-t-il des traitements expérimentaux ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-traitements"
},
{
"@type": "MedicalWebPage",
"name": "Complications",
"headline": "Complications sur Myopathie à axe central",
"description": "Quelles complications peuvent survenir ?\nLa myopathie peut-elle affecter la vie quotidienne ?\nY a-t-il un risque de cardiomyopathie ?\nLes infections sont-elles plus fréquentes ?\nComment gérer les complications ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-complications"
},
{
"@type": "MedicalWebPage",
"name": "Facteurs de risque",
"headline": "Facteurs de risque sur Myopathie à axe central",
"description": "Quels sont les facteurs de risque génétiques ?\nL'âge est-il un facteur de risque ?\nLe sexe influence-t-il le risque ?\nDes facteurs environnementaux jouent-ils un rôle ?\nLes maladies associées augmentent-elles le risque ?",
"url": "https://questionsmedicales.fr/mesh/D020512?mesh_terms=Needs+Assessment#section-facteurs de risque"
}
]
},
{
"@type": "FAQPage",
"mainEntity": [
{
"@type": "Question",
"name": "Comment diagnostique-t-on la myopathie à axe central ?",
"position": 1,
"acceptedAnswer": {
"@type": "Answer",
"text": "Le diagnostic repose sur l'examen clinique, l'électromyogramme et la biopsie musculaire."
}
},
{
"@type": "Question",
"name": "Quels tests génétiques sont utilisés ?",
"position": 2,
"acceptedAnswer": {
"@type": "Answer",
"text": "Des tests génétiques peuvent identifier des mutations dans le gène RYR1, associé à cette myopathie."
}
},
{
"@type": "Question",
"name": "Quels signes cliniques sont observés ?",
"position": 3,
"acceptedAnswer": {
"@type": "Answer",
"text": "On observe souvent une faiblesse musculaire proximale et des anomalies dans les biopsies musculaires."
}
},
{
"@type": "Question",
"name": "L'IRM est-elle utile pour le diagnostic ?",
"position": 4,
"acceptedAnswer": {
"@type": "Answer",
"text": "Oui, l'IRM peut montrer des anomalies musculaires caractéristiques de la myopathie à axe central."
}
},
{
"@type": "Question",
"name": "Quel rôle joue l'historique familial ?",
"position": 5,
"acceptedAnswer": {
"@type": "Answer",
"text": "Un historique familial de myopathies peut orienter le diagnostic vers une origine génétique."
}
},
{
"@type": "Question",
"name": "Quels sont les principaux symptômes ?",
"position": 6,
"acceptedAnswer": {
"@type": "Answer",
"text": "Les symptômes incluent faiblesse musculaire, fatigue et parfois des douleurs musculaires."
}
},
{
"@type": "Question",
"name": "La myopathie affecte-t-elle tous les muscles ?",
"position": 7,
"acceptedAnswer": {
"@type": "Answer",
"text": "Elle touche principalement les muscles proximaux, comme ceux des hanches et des épaules."
}
},
{
"@type": "Question",
"name": "Y a-t-il des symptômes respiratoires ?",
"position": 8,
"acceptedAnswer": {
"@type": "Answer",
"text": "Dans certains cas, la faiblesse musculaire peut affecter les muscles respiratoires."
}
},
{
"@type": "Question",
"name": "Les symptômes varient-ils selon l'âge ?",
"position": 9,
"acceptedAnswer": {
"@type": "Answer",
"text": "Oui, les symptômes peuvent apparaître dès l'enfance ou à l'âge adulte, selon les cas."
}
},
{
"@type": "Question",
"name": "Des troubles de la marche sont-ils fréquents ?",
"position": 10,
"acceptedAnswer": {
"@type": "Answer",
"text": "Oui, la faiblesse musculaire peut entraîner des difficultés à marcher ou à se lever."
}
},
{
"@type": "Question",
"name": "Peut-on prévenir la myopathie à axe central ?",
"position": 11,
"acceptedAnswer": {
"@type": "Answer",
"text": "Étant génétique, il n'existe pas de prévention, mais un diagnostic précoce aide à la gestion."
}
},
{
"@type": "Question",
"name": "Le dépistage est-il recommandé ?",
"position": 12,
"acceptedAnswer": {
"@type": "Answer",
"text": "Le dépistage génétique peut être conseillé pour les familles à risque de transmission."
}
},
{
"@type": "Question",
"name": "Des conseils de vie peuvent-ils aider ?",
"position": 13,
"acceptedAnswer": {
"@type": "Answer",
"text": "Des conseils sur l'exercice et la nutrition peuvent améliorer la qualité de vie des patients."
}
},
{
"@type": "Question",
"name": "Les activités physiques sont-elles bénéfiques ?",
"position": 14,
"acceptedAnswer": {
"@type": "Answer",
"text": "Des activités adaptées peuvent aider à maintenir la force musculaire et la mobilité."
}
},
{
"@type": "Question",
"name": "Les consultations régulières sont-elles nécessaires ?",
"position": 15,
"acceptedAnswer": {
"@type": "Answer",
"text": "Oui, des suivis réguliers permettent d'ajuster les traitements et surveiller l'évolution."
}
},
{
"@type": "Question",
"name": "Quels traitements sont disponibles ?",
"position": 16,
"acceptedAnswer": {
"@type": "Answer",
"text": "Il n'existe pas de traitement curatif, mais la physiothérapie aide à maintenir la force musculaire."
}
},
{
"@type": "Question",
"name": "Les médicaments sont-ils efficaces ?",
"position": 17,
"acceptedAnswer": {
"@type": "Answer",
"text": "Des médicaments peuvent être prescrits pour gérer les symptômes, mais leur efficacité varie."
}
},
{
"@type": "Question",
"name": "La chirurgie est-elle une option ?",
"position": 18,
"acceptedAnswer": {
"@type": "Answer",
"text": "La chirurgie n'est généralement pas indiquée, sauf pour des complications spécifiques."
}
},
{
"@type": "Question",
"name": "Comment la rééducation aide-t-elle ?",
"position": 19,
"acceptedAnswer": {
"@type": "Answer",
"text": "La rééducation physique aide à améliorer la fonction musculaire et la qualité de vie."
}
},
{
"@type": "Question",
"name": "Y a-t-il des traitements expérimentaux ?",
"position": 20,
"acceptedAnswer": {
"@type": "Answer",
"text": "Des essais cliniques explorent des thérapies géniques et des traitements ciblés."
}
},
{
"@type": "Question",
"name": "Quelles complications peuvent survenir ?",
"position": 21,
"acceptedAnswer": {
"@type": "Answer",
"text": "Les complications incluent des problèmes respiratoires et des déformations musculo-squelettiques."
}
},
{
"@type": "Question",
"name": "La myopathie peut-elle affecter la vie quotidienne ?",
"position": 22,
"acceptedAnswer": {
"@type": "Answer",
"text": "Oui, la faiblesse musculaire peut limiter les activités quotidiennes et l'autonomie."
}
},
{
"@type": "Question",
"name": "Y a-t-il un risque de cardiomyopathie ?",
"position": 23,
"acceptedAnswer": {
"@type": "Answer",
"text": "Certaines formes de myopathie peuvent être associées à des problèmes cardiaques."
}
},
{
"@type": "Question",
"name": "Les infections sont-elles plus fréquentes ?",
"position": 24,
"acceptedAnswer": {
"@type": "Answer",
"text": "Les infections peuvent survenir en raison de la faiblesse musculaire et de l'immobilité."
}
},
{
"@type": "Question",
"name": "Comment gérer les complications ?",
"position": 25,
"acceptedAnswer": {
"@type": "Answer",
"text": "Une prise en charge multidisciplinaire est essentielle pour gérer les complications."
}
},
{
"@type": "Question",
"name": "Quels sont les facteurs de risque génétiques ?",
"position": 26,
"acceptedAnswer": {
"@type": "Answer",
"text": "Les antécédents familiaux de myopathies augmentent le risque de développer cette maladie."
}
},
{
"@type": "Question",
"name": "L'âge est-il un facteur de risque ?",
"position": 27,
"acceptedAnswer": {
"@type": "Answer",
"text": "L'âge d'apparition peut varier, mais les symptômes se manifestent souvent dans l'enfance."
}
},
{
"@type": "Question",
"name": "Le sexe influence-t-il le risque ?",
"position": 28,
"acceptedAnswer": {
"@type": "Answer",
"text": "Les myopathies peuvent affecter les deux sexes, mais certaines formes sont plus fréquentes chez les hommes."
}
},
{
"@type": "Question",
"name": "Des facteurs environnementaux jouent-ils un rôle ?",
"position": 29,
"acceptedAnswer": {
"@type": "Answer",
"text": "Actuellement, les facteurs environnementaux ne sont pas clairement établis comme des risques."
}
},
{
"@type": "Question",
"name": "Les maladies associées augmentent-elles le risque ?",
"position": 30,
"acceptedAnswer": {
"@type": "Answer",
"text": "Certaines maladies auto-immunes peuvent coexister avec la myopathie, mais leur lien n'est pas direct."
}
}
]
}
]
}
Department of Neuromuscular Research, National Center of Neurology and Psychiatry (NCNP), National Institute of Neuroscience, 4-1-1 Ogawahigashi, Tokyo 187-8502, Japan; Medical Genome Center, NCNP, Tokyo, Kodaira, Japan. Electronic address: nishino@ncnp.go.jp.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
Department of Neuromuscular Research, National Institute of Neuroscience, National Center of Neurology and Psychiatry, 187-8502 Tokyo, Japan; Department of Genome Medicine Development, Medical Genome Center, National Center of Neurology and Psychiatry, 187-8551 Tokyo, Japan.
From the Department of Learning, Informatics and Medical Education, Karolinska Institutet; Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital, Department of Neurobiology, Care Science and Society, Division of Physiotherapy and Department of Medicine, Karolinska Institutet; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, Korea; Division of Rheumatology, Fiona Stanley Hospital, Institute for Immunology and Infectious Diseases, Murdoch University, Perth; The Notre Dame University Fremantle, Fremantle, Australia; Amsterdam UMC, University of Amsterdam, Department of Neurology, Amsterdam Neuroscience, Amsterdam, the Netherlands; Center for Global Health, University of Ottawa, Ottawa, Ontario, Canada.
M. Regardt, PhD, Occupational Therapist, Department of Learning, Informatics and Medical Education, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital; C.A. Mecoli, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; J.K. Park, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital; I. de Groot, Patient Research Partner; C. Sarver, Patient Research Partner; M. Needham, MD, Division of Rheumatology, Fiona Stanley Hospital, Institute for Immunology and Infectious Diseases, Murdoch University, and The Notre Dame University; M. de Visser, MD, PhD, Amsterdam UMC, University of Amsterdam, Department of Neurology, Amsterdam Neuroscience; B. Shea, MSN, Center for Global Health, University of Ottawa; C.O. Bingham III, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; I.E. Lundberg, MD, PhD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska Institutet; Y.W. Song, MD, PhD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; H. Alexanderson, PhD, Physiotherapist, Department of Neurobiology, Care Science and Society, Division of Physiotherapy and Department of Medicine Solna, Karolinska Institutet, and Function Area Occupational Therapy and Physical Therapy, Allied Health Professionals Function, Karolinska University Hospital. M. Regardt and Dr. C. Mecoli are co-first authors.
Department of Neuromuscular Research, National Center of Neurology and Psychiatry (NCNP), National Institute of Neuroscience, 4-1-1 Ogawahigashi, Tokyo 187-8502, Japan; Medical Genome Center, NCNP, Tokyo, Kodaira, Japan; Department of Pediatrics, Showa General Hospital, Tokyo, Kodaira, Japan.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France.
INSERM, GIN-U1216, CHU Grenoble Alpes, Grenoble Institut Neurosciences, University Grenoble Alpes, Bat EJ Safra, Chemin Fortuné Ferrini, La Tronche, Grenoble, France. isabelle.marty@univ-grenoble-alpes.fr.
Neuromuscular Morphology Unit, Myology Institute, Groupe Hospitalier Universitaire La Pitié-Salpêtrière, Paris, France. matteo.garibaldi@uniroma1.it.
Unit of Neuromuscular Diseases, Neuromuscular Disease Centre, Department of Neurology Mental Health and Sensory Organs (NESMOS), Faculty of Medicine and Psychology, SAPIENZA University of Rome, Sant'Andrea Hospital, Via di Grottarossa 1035-1039, 00189, Rome, Italy. matteo.garibaldi@uniroma1.it.
Service Neurologie Médicale, Centre de Référence Maladies Neuromusculaire Paris-Est-Ile de France, CHU Raymond-Poincaré Paris Ouest, Garches, France.
U1179 UVSQ-INSERM Handicap Neuromusculaire: Physiologie, Biothérapie et Pharmacologie appliquées, UFR des sciences de la santé Simone Veil, Université Versailles-Saint-Quentin-en-Yvelines, Versailles, France.
Unit of Neuromuscular Diseases, Neuromuscular Disease Centre, Department of Neurology Mental Health and Sensory Organs (NESMOS), Faculty of Medicine and Psychology, SAPIENZA University of Rome, Sant'Andrea Hospital, Via di Grottarossa 1035-1039, 00189, Rome, Italy.
Every novel curriculum begins with a needs assessment. A general needs assessment identifies the problem that a curriculum seeks to address, and it clearly delineates the gap between the current and i...
Little is known about cancer survivors' needs in Alaska. To address this knowledge gap, the Alaska Cancer Partnership conducted a needs assessment survey; our objectives were to identify unmet needs o...
Cancer survivors were identified using data from the Alaska Cancer Registry. A random sample of 2,600 individuals was selected to receive the survey, which assessed unmet needs across the following do...
We received 335 survey responses, for a response of 13.7%. Only 29.9% of cancer survivors expressed that all their needs were met. The most highly ranked unmet needs were as follows: help to reduce st...
This assessment provided some of the first information regarding the needs of Alaska's cancer survivors. These results will be used by Alaska Cancer Partnership members across the state to inform heal...
The field of otolaryngology-head and neck surgery is rapidly changing, and surgical education must keep pace. In the face of recent advances in medical knowledge, surgical technique, and novel technol...
Oncological at home-treatment improves patient quality of life and autonomy but requires close watchfulness of adverse events and compliance to treatment. For nearly ten years, pharmaceutical consulta...
Needs and expectations assessment questionnaires were proposed to healthcare professionals and patients treated by oral therapies. The analysis of these questionnaires allows to set up an OTU, integra...
The results of the studies carried out before OTU implementation highlight the importance of multi-professional support for patients from the start of treatment and during the follow-up. With the new ...
The OTU creation in our institution and these new multi-professionals' teams' management of patients has obtained a favourable opinion from healthcare professionals and patient satisfaction....
The purposes of this study were to assess the current competencies and desired competency development of nurse educators and to examine differences in how they ranked their needs by participants' gend...
We conducted a cross-sectional study. Participants were 435 nurse educators working at nursing colleges under the Ministry of Public Health, Thailand, in 2021....
Participants had significantly higher desired scores for competency development than the actual condition scores (p < .05). They prioritized their competence development needs from highest to lowest s...
Nurse educators first emphasized knowledge and teaching skills improvement, followed by enhancing value. However, their needs were not different when categorized by gender, age, educational qualificat...
Workplace-based assessment (WBA) has been vigorously criticized for not fulfilling its educational purpose by medical educators. A comprehensive exploration of stakeholders' needs regarding WBA is ess...
Three homogeneous focus groups were conducted with three groups of stakeholders: General Practitioner (GP) trainees, GP trainers, and GP tutors. Due to COVID-19 measures, we opted for an online asynch...
Three core needs for WBA were identified in the analysis. Within GP Training, stakeholders found WBA essential, primarily, for establishing learning goals, secondarily, for assessment purposes, and, l...
All stakeholders perceive WBA as valuable when it fosters learning. The identified needs were notably influenced by agency, trust, availability, and mutual understanding. These were facilitating facto...
Many students report feeling inadequately prepared for their clinical experiences in pediatrics. There is striking variability on how pediatric clinical skills are taught in pre-clerkship curricula....
We asked students who completed their clerkships in pediatrics, family medicine, surgery, obstetrics-gynecology and internal medicine to rate their pre-clinical training in preparing them for each cle...
Close to 1/3 of students reported not feeling adequately prepared for their pediatrics, obstetrics-gynecology, or surgery clerkship. Students felt less prepared to perform pediatric physical exam skil...
As medical schools undergo cycles of curricular reform, it may be beneficial to integrate more pre-clerkship exposure to pediatric topics and skills. Further exploration and collaboration establishing...
AbstractBackground: Carers of people with dementia (PWD) face a myriad of challenges. As dementia prevalence surges in the sub-Saharan population, the provision of data on the met and unmet needs of c...
This study aimed to identify the needs of carers of older adults living with dementia in Ghana....
This study was conducted in Kumasi, Ghana, among participants ≥ 18 years old, serving as carers for PWD....
This was a multicentre cross-sectional study involving carers of patients (≥ 50 years) with dementia. The authors administered the Carer's Needs Assessment for Dementia (CNA-D) questionnaire, containi...
Fifty participants were recruited with a mean age of 48.8 (± 16.9) years, 72.0% were female participants and 98.0% were family members of PWD. The problem area most frequently identified as no/mild pr...
Effective public education and provision of information on dementia to carers are essential interventions needed to equip them in performing their roles.Contribution: Carers in this study revealed tha...
Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and gender-diverse...
Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs). GLA is a structured, p...
Six major themes emerged from the GLAs regarding decision support needs, including: improving healthcare provider skills and education, increasing access to support outside the healthcare system, stre...
Participants identified decision support needs for TGD youth and their families that were mostly distinct from traditional decision support approaches. Participants' focus on the need to improve healt...
Physical activity yields significant benefits, yet fewer than 1 in 4 youth meet federal guidelines. Children in rural areas from low socioeconomic (SES) backgrounds face unique physical activity conte...
A cross-sectional survey data collection was conducted with children (...
At the individual level, 71.8% of children and 82.2% of the overall sample (children and adults) were interested in new physical activity/sport programming for their school. Likewise, 89.7% of childre...
Interventions addressing children's physical activity lack sustainability, scalability, and impact due to limited stakeholder involvement and often neglect early behavioral intervention stages. The pr...