{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T20:01:26Z","timestamp":1789502486764,"version":"build-2803163510"},"reference-count":23,"publisher":"MDPI AG","issue":"3","license":[{"start":{"date-parts":[[2025,3,13]],"date-time":"2025-03-13T00:00:00Z","timestamp":1741824000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinics and Practice"],"abstract":"<jats:p>Background: Dysphagia is a common complication in myopathy, significantly impacting patients\u2019 quality of life (QoL) and overall health. Caregivers play a critical role in identifying and addressing swallowing difficulties in this population. The main purpose of this study was to assess the knowledge and experiences of professional caregivers of patients with myopathy regarding the recognition and management of dysphagia in Cyprus. Methods: The study was designed as an anonymous, cross-sectional descriptive survey and involved 10 professional caregivers of patients with myopathy in Cyprus. Results: The most common dysphagia symptoms reported in myopathy patients were coughing, chewing difficulties, choking on fluids, and challenges with swallowing boluses. Only one caregiver reported difficulty managing swallowing issues, particularly in cases of reluctance to eat. Approximately 60% had received relevant training, primarily through workplace programs. Overall, caregivers did not perceive dysphagia as a significant burden. Conclusions: Dysphagia is a prevalent phenomenon in myopathy. The study reveals that caregivers of myopathy patients, regardless of their professional backgrounds, face hidden challenges in managing complex neurogenic dysphagia. They often misjudge the severity of the condition and overestimate their own competencies. Providing caregivers of patients with myopathy with targeted education would help them effectively manage swallowing difficulties associated with the condition. Encouragingly, our study also suggests that focused dysphagia education could reduce caregiver stress and enhance their overall well-being. Future efforts should concentrate on ensuring access to well-trained professionals, establishing specialized clinics, and promoting education to enhance MND-related dysphagia management and patient care.<\/jats:p>","DOI":"10.3390\/clinpract15030061","type":"journal-article","created":{"date-parts":[[2025,3,13]],"date-time":"2025-03-13T06:53:00Z","timestamp":1741848780000},"page":"61","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Caregivers\u2019 Knowledge and Experiences in Recognizing and Managing Dysphagia in Patients with Myopathy"],"prefix":"10.3390","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-1239-8739","authenticated-orcid":false,"given":"Maria","family":"Demetriou","sequence":"first","affiliation":[{"name":"The \u201cCyprus Rehabilitating Aphasia and Dysphagia\u201d (C-RAD) Lab, Department of Rehabilitation Sciences, School of Health Sciences, Cyprus University of Technology, 95 Irinis Str., 3041 Limassol, Cyprus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Demetra","family":"Tziirkalli","sequence":"additional","affiliation":[{"name":"The \u201cCyprus Rehabilitating Aphasia and Dysphagia\u201d (C-RAD) Lab, Department of Rehabilitation Sciences, School of Health Sciences, Cyprus University of Technology, 95 Irinis Str., 3041 Limassol, Cyprus"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8583-6760","authenticated-orcid":false,"given":"Anastasios M.","family":"Georgiou","sequence":"additional","affiliation":[{"name":"The \u201cCyprus Rehabilitating Aphasia and Dysphagia\u201d (C-RAD) Lab, Department of Rehabilitation Sciences, School of Health Sciences, Cyprus University of Technology, 95 Irinis Str., 3041 Limassol, Cyprus"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,3,13]]},"reference":[{"key":"ref_1","unstructured":"Nagy, H., and Veerapaneni, K.D. (2023). Myopathy. StatPearls [Internet], StatPearls Publishing."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1016\/j.nmd.2020.11.001","article-title":"Dysphagia in adult myopathies","volume":"31","author":"Argov","year":"2021","journal-title":"Neuromuscul. Disord."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"389","DOI":"10.3233\/JND-230002","article-title":"Living with dysphagia: A survey exploring the experiences of adults living with neuromuscular disease and their caregivers in the United Kingdom","volume":"11","author":"Allen","year":"2024","journal-title":"J. Neuromuscul. Dis."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1007\/s11926-020-00950-3","article-title":"Impact and management of dysphagia in inflammatory myopathies","volume":"22","author":"Zeng","year":"2020","journal-title":"Curr. Rheumatol. Rep."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"473","DOI":"10.1007\/s00455-021-10338-9","article-title":"Autoimmune Neurogenic Dysphagia","volume":"37","author":"Stathopoulos","year":"2021","journal-title":"Dysphagia"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"863","DOI":"10.1080\/09638280701403460","article-title":"Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part two","volume":"30","author":"Pieterse","year":"2008","journal-title":"Disabil. Rehabil."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"e11039","DOI":"10.1097\/MD.0000000000011039","article-title":"Determining the burden of the family caregivers of people with neuromuscular diseases who use a wheelchair","volume":"97","author":"Pousada","year":"2018","journal-title":"Medicine"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"984","DOI":"10.1097\/PHM.0b013e318269eceb","article-title":"How assistive technology use by individuals with disabilities impacts their caregivers: A systematic review of the research evidence","volume":"91","author":"Mortenson","year":"2012","journal-title":"Am. J. Phys. Med. Rehabil."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1097\/JNN.0000000000000178","article-title":"Hard to Swallow: A Phenomenological Exploration of the Experience of Caring for Individuals with Myotonic Dystrophy and Dysphagia","volume":"48","author":"LaDonna","year":"2016","journal-title":"J. Neurosci. Nurs."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"e34","DOI":"10.2196\/jmir.6.3.e34","article-title":"Improving the quality of web surveys: The checklist for reporting results of internet E-Surveys (CHERRIES)","volume":"6","author":"Eysenbach","year":"2004","journal-title":"J. Med. Internet Res."},{"key":"ref_11","unstructured":"Qualtrics (2024, October 10). Version. Qualtrics [Computer Software]. Available online: https:\/\/www.qualtrics.com."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1002\/mus.26405","article-title":"The requirement for a disease-specific patient-reported outcome measure of dysphagia in oculopharyngeal muscular dystrophy","volume":"59","author":"Gagnon","year":"2019","journal-title":"Muscle Nerve"},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"344","DOI":"10.1002\/mus.26996","article-title":"Myopathies featuring early or prominent dysphagia","volume":"62","author":"Triplett","year":"2020","journal-title":"Muscle Nerve"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"64","DOI":"10.1007\/s00455-011-9338-0","article-title":"Dysphagia in inflammatory myopathy: Self-report, incidence, and prevalence","volume":"27","author":"Mulcahy","year":"2011","journal-title":"Dysphagia"},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"441","DOI":"10.4065\/82.4.441","article-title":"Dysphagia in inflammatory myopathy: Clinical characteristics, treatment strategies, and outcome in 62 patients","volume":"82","author":"Oh","year":"2007","journal-title":"Mayo Clin. Proc."},{"key":"ref_16","doi-asserted-by":"crossref","unstructured":"Neves, R.N., Matos, M.A., and Carvalho, I.P. (2024). Communicating risks and food procedures through a visual poster for caregivers of patients with dysphagia in inpatient care: Usability and impact. Healthcare, 12.","DOI":"10.3390\/healthcare12020148"},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"1018","DOI":"10.1111\/1460-6984.12977","article-title":"Identifying prioritised actions for improving dysphagia services in Singapore: Insights from concept mapping with patients and caregivers","volume":"59","author":"Poon","year":"2024","journal-title":"Int. J. Lang. Commun. Disord."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"990","DOI":"10.1007\/s00455-022-10524-3","article-title":"Assessment of online patient education material about dysphagia","volume":"38","author":"Steiner","year":"2022","journal-title":"Dysphagia"},{"key":"ref_19","first-page":"235","article-title":"Multidisciplinary management of dysphagia","volume":"48","author":"Logemann","year":"1994","journal-title":"Acta Oto-Rhino-Laryngol. Belg."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"365","DOI":"10.2169\/internalmedicine.9372-22","article-title":"Caregiver burden with Duchenne and Becker muscular dystrophy in Japan: A clinical observation study","volume":"63","author":"Ishizaki","year":"2024","journal-title":"Intern. Med."},{"key":"ref_21","doi-asserted-by":"crossref","first-page":"486","DOI":"10.1044\/2021_AJSLP-21-00249","article-title":"Understanding burden in caregivers of adults with dysphagia: A systematic review","volume":"31","author":"Rangira","year":"2022","journal-title":"Am. J. Speech-Lang. Pathol."},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"987","DOI":"10.1111\/dmcn.13934","article-title":"Duchenne muscular dystrophy and caregiver burden: A systematic review","volume":"60","author":"Landfeldt","year":"2018","journal-title":"Dev. Med. Child Neurol."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"906","DOI":"10.1007\/s00415-016-8080-9","article-title":"Quantifying the burden of caregiving in Duchenne muscular dystrophy","volume":"263","author":"Landfeldt","year":"2016","journal-title":"J. Neurol."}],"container-title":["Clinics and Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2039-7283\/15\/3\/61\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,9]],"date-time":"2025-10-09T16:52:57Z","timestamp":1760028777000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2039-7283\/15\/3\/61"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,3,13]]},"references-count":23,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2025,3]]}},"alternative-id":["clinpract15030061"],"URL":"https:\/\/doi.org\/10.3390\/clinpract15030061","relation":{},"ISSN":["2039-7283"],"issn-type":[{"value":"2039-7283","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,3,13]]}}}