title: Adult care for Duchenne muscular dystrophy in the UK.
abstract: 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.
authors.affiliation: Institute of Genetic Medicine, International Centre for Life, Newcastle University, Central Parkway, Newcastle upon Tyne, NE1 3BZ, UK.
authors.forename: Sunil
authors.initials: S
authors.lastname: Rodger
authors.forename: Katherine L
authors.initials: KL
authors.lastname: Woods
authors.forename: Catherine L
authors.initials: CL
authors.lastname: Bladen
authors.forename: Angela
authors.initials: A
authors.lastname: Stringer
authors.forename: Julia
authors.initials: J
authors.lastname: Vry
authors.forename: Kathrin
authors.initials: K
authors.lastname: Gramsch
authors.forename: Janbernd
authors.initials: J
authors.lastname: Kirschner
authors.forename: Rachel
authors.initials: R
authors.lastname: Thompson
authors.forename: Katharine
authors.initials: K
authors.lastname: Bushby
authors.forename: Hanns
authors.initials: H
authors.lastname: Lochmüller
mesh_terms: D000328:Adult; D002318:Cardiovascular Diseases / Q000209:etiology / Q000628:therapy; D015331:Cohort Studies; D003431:Cross-Cultural Comparison; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000379:methods* / Q000706:statistics & numerical data*; D005060:Europe / Q000453:epidemiology; D005260:Female; D006306:Health Surveys; D006760:Hospitalization / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000453:epidemiology* / Q000503:physiopathology / Q000523:psychology / Q000628:therapy*; D017060:Patient Satisfaction; D011795:Surveys and Questionnaires; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult