welcome to DuchenneXchange
- a positively charged Duchenne muscular dystrophy community.- join today!
- log in
Compliance to Care Guidelines for Duchenne Muscular Dystrophy
source: Journal of Neuromuscular Diseases
year: 2016
authors: Erik Landfeldt, Peter Lindgren, Christopher F. Bell, Claude Schmitt, Michela Guglieri, Volker Straub, Hanns Lochmüller, Katharine Bushby
summary/abstract:Background:
International care guidelines for Duchenne muscular dystrophy (DMD) were published in 2010, but compliance in clinical practice is unknown.
Objective:
The objective of our study was to compare real-world DMD care in Germany, Italy, the UK, and the US with the clinical recommendations.
Methods:
DMD patients from Germany, Italy, the UK, and the US were identified through Translational Research in Europe – Assessment & Treatment of Neuromuscular Diseases (TREAT-NMD) registries and invited with a caregiver to complete a questionnaire with questions regarding DMD-related healthcare. Estimates of care were stratified by disease stage (early/late ambulatory/non-ambulatory) and compared against the care guidelines.
Results:
A total of 770 patients (173 German, 122 Italian, 191 UK, and 284 US) completed the questionnaire. Poor compliance to guidelines of routine follow-up by neuromuscular, cardiac, and respiratory specialists, physiotherapy, and access to medical devices and aids were observed in all countries. Less than 27% (209 of 770) of patients met all absolute recommendations, ranging from 9% (11 of 122) in Italy to 37% (70 of 191) in the UK, and from 49% (76 of 155) in the early ambulatory class to 16% (33 of 205) in the late non-ambulatory class.
Conclusions:
We show that the medical management of DMD varies substantially between Germany, Italy, the UK, and the US. Experience of real-world DMD care appears to be in poor agreement with the DMD clinical guidelines and increased compliance is urgently needed to improve treatment outcomes and enable patients to lead fulfilling, independent lives into adulthood.
DOI: 10.3233/JND-140053
read more
rareRelated
-
Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial ca...Improvements in the function, quality of...
-
Imperatives for DUCHENNE MD: a Simplified Guide to Comprehensive Care for Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a p...
-
Duchenne Care ConsiderationsThese international publications can be ...
-
Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endoc...Since the publication of the Duchenne mu...
-
Impact of three decades of improvements in standards of care on clinical outcomes in Duchenne muscular dystrophyObjective: The last three decades have ...
-
The PJ Nicholoff Steroid Protocol for Duchenne and Becker Muscular Dystrophy and Adrenal SuppressionDuchenne muscular dystrophy (DMD or Duch...
-
Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic ...A coordinated, multidisciplinary approac...