Adult care for Duchenne muscular dystrophy in the UK
| Autor: | Rachel Thompson, Janbernd Kirschner, Katharine Bushby, Katherine L. Woods, Sunil Rodger, K. Gramsch, Hanns Lochmüller, Catherine L. Bladen, Angela Stringer, J. Vry |
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| Rok vydání: | 2014 |
| Předmět: |
Adult
Cross-Cultural Comparison Male Duchenne muscular dystrophy medicine.medical_specialty Cross-sectional study Population Clinical Neurology MEDLINE Care Cohort Studies Young Adult Patient satisfaction Surveys and Questionnaires DMD CARE-NMD Humans Medicine Young adult education Psychiatry education.field_of_study Original Communication business.industry Attendance Health Surveys United Kingdom Europe Hospitalization Muscular Dystrophy Duchenne Cross-Sectional Studies Neurology Respiratory failure Cardiovascular Diseases Patient Satisfaction Neuromuscular Family medicine Female Neurology (clinical) business Delivery of Health Care Cohort study |
| Zdroj: | Journal of Neurology |
| ISSN: | 1432-1459 0340-5354 |
| DOI: | 10.1007/s00415-014-7585-3 |
| Popis: | Survival in Duchenne muscular dystrophy (DMD) has increased in recent years due to iterative improvements in care. We describe the results of the CARE-NMD survey of care practices for adults with DMD in the UK in light of international consensus care guidelines. We also compare the UK experience of adult care with the care available to pediatric patients and adults in other European countries (Germany, Denmark, Bulgaria, Czech Republic, Hungary, and Poland). UK adults experience less comprehensive care compared to children in their access to specialized clinics, frequency of cardiac and respiratory assessments, and access to professional physiotherapy. Access to the latter is especially poor when compared to other European adult cohorts. Although the total number of nights in hospital (planned and unplanned admissions) is lower among UK adults than elsewhere in Western Europe, social inclusion lags behind other Western European countries. We observe that attendance at specialized clinic is associated with more frequent cardiac and respiratory assessments among adults, in line with international best practice. Attendance at such clinics in the UK, though comparable to other countries, is still far from universal. With an increasing adult population living with DMD, and cardiac and respiratory failure the leading causes of death in this population, we suggest the need for an urgent improvement in adult access to specialized clinics and to consistent, comprehensive best practice care. |
| Databáze: | OpenAIRE |
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