Compliance to DMD Care Considerations in the Netherlands
Autor: | Imelda J. M. de Groot, Jan J.G.M. Verschuuren, Lotte Heutinck, Erik H. Niks, Yvonne D. Krom, Merel Jansen, Saskia L.S. Houwen-van Opstal |
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Rok vydání: | 2021 |
Předmět: |
Disease specific
Research Report Adult Male Duchenne muscular dystrophy medicine.medical_specialty Clinical tests Adolescent Health Personnel compliance Compliance (psychology) 03 medical and health sciences Young Adult 0302 clinical medicine All institutes and research themes of the Radboud University Medical Center Acquired immunodeficiency syndrome (AIDS) 030225 pediatrics Surveys and Questionnaires Health care medicine Humans Child Netherlands Shared care business.industry shared care Guideline medicine.disease Disorders of movement Donders Center for Medical Neuroscience [Radboudumc 3] Muscular Dystrophy Duchenne Cross-Sectional Studies Neurology Caregivers Family medicine Patient Compliance Corticosteroid use Neurology (clinical) business guideline 030217 neurology & neurosurgery |
Zdroj: | Journal of Neuromuscular Diseases, 8, 6, pp. 927-938 Journal of Neuromuscular Diseases, 8, 927-938 Journal of Neuromuscular Diseases Journal of Neuromuscular Diseases, 8(6), 927-938. IOS PRESS |
ISSN: | 2214-3599 |
Popis: | Background and objective: To optimize care for patients with DMD, it is essential to know to what extent current care complies with the recommended monitoring frequencies suggested by the DMD care considerations. The objective of this study was to investigate the current care for patients with DMD in the Netherlands and to what extent the care complies with the international care considerations. Methods: A cross-sectional questionnaire was carried out among the Dutch DMD patients and caregivers about the patients’ functional and health status, visits to healthcare professionals, clinical tests and assessments, therapy, medication use and access to medical aids and devices. Compliance to guidelines was defined by comparing the frequency of visits to health care providers and clinical tests with the recommended frequencies derived from the care considerations of 2010. Results: Eighty-four participants completed the questionnaire. The majority of participants met the recommended visit frequencies to a neuromuscular specialist and cardiologist. Compliance was suboptimal for respiratory assessments in the non-ambulatory phase, monitoring of side effects of corticosteroid use and neuromuscular assessments. Disease specific information supply was perceived as sufficient and participants were satisfied with the received care. Conclusions: This study identifies areas in which compliance is lacking. Countries, such as the Netherlands, working according to a shared care system require easy and low-threshold communication between health care centers and a clear division of roles and responsibilities to reach optimal compliance. In the Netherlands the Duchenne Center Netherlands has the coordinating role. |
Databáze: | OpenAIRE |
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