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Physiotherapy management in late-onset Pompe disease: Clinical practice in 88 patients.
MedLine Citation:
PMID:  22901700     Owner:  NLM     Status:  Publisher    
Abstract/OtherAbstract:
Pompe disease is an inherited metabolic, neuromuscular disorder. With the introduction of enzyme replacement therapy skeletal muscle and respiratory function can be stabilized or improved. Additional physiotherapy to advance physical functioning of patients might be beneficial, but evidence and guidelines are lacking. In order to get an insight into current practices of referral and treatment, and perceived benefit, we performed a survey among 88 Dutch adult Pompe patients and 31 physiotherapists. Sixty percent of patients were ever referred for physiotherapy, whereas currently less than 40% receive physiotherapy. Approximately 50% of patients were referred for loss of muscle strength; while 74% received muscle strengthening exercises, often combined with aerobic endurance training. In 47% of patients the intervention did not match the referral reason. More than two-thirds of patients and physiotherapists perceived physiotherapy as beneficial, and the majority highlighted the need for guidance. Physiotherapeutic care can be improved by tailoring interventions to referral reasons and treatment objectives. More high quality studies are urgently needed to assess which interventions are most useful in this patient group.
Authors:
Marein M Favejee; Bionka M A Huisstede; Johannes B J Bussmann; Michelle E Kruijshaar; Ans T van der Ploeg
Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2012-7-20
Journal Detail:
Title:  Molecular genetics and metabolism     Volume:  -     ISSN:  1096-7206     ISO Abbreviation:  Mol. Genet. Metab.     Publication Date:  2012 Jul 
Date Detail:
Created Date:  2012-8-20     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9805456     Medline TA:  Mol Genet Metab     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Copyright Information:
Copyright © 2012. Published by Elsevier Inc.
Affiliation:
Dept. of Rehabilitation Medicine & Physical Therapy, Erasmus Medical Center, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands; Center for Lysosomal and Metabolic Diseases, Erasmus MC University Medical Center, P.O. Box 2060, 3000 CB, Rotterdam, The Netherlands.
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