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Enzyme replacement therapy in the home setting for mucopolysaccharidosis VI: a survey of patient characteristics and physicians' early findings in the United States.

Abstract
Galsulfase, a Food and Drug Administration-approved enzyme replacement therapy for mucopolysaccharidosis VI, is administered once weekly in a hospital setting as a 4-hour intravenous infusion. To improve convenience and alleviate family responsibilities associated with clinic visits, some physicians are transitioning appropriate patients to home infusion therapy. An online survey was conducted with 3 physicians treating 4 patients with mucopolysaccharidosis VI to better understand the factors motivating the transition to home infusion therapy, identify characteristics of appropriate candidates, and evaluate the potential impact on the lives of patients and their families. Survey results showed that home infusion may offer patients and their families increased flexibility of schedule and enhanced family life.
AuthorsCynthia Tifft, Virginia Proud, Paul Levy, Kristin DeMarco, Helen Nicely, Sean Turbeville
JournalJournal of infusion nursing : the official publication of the Infusion Nurses Society (J Infus Nurs) 2009 Jan-Feb Vol. 32 Issue 1 Pg. 45-52 ISSN: 1539-0667 [Electronic] United States
PMID19142150 (Publication Type: Journal Article)
Chemical References
  • Recombinant Proteins
  • N-Acetylgalactosamine-4-Sulfatase
  • galsulfase
Topics
  • Data Collection
  • Home Infusion Therapy
  • Humans
  • Infusions, Intravenous
  • Mucopolysaccharidosis VI (drug therapy)
  • N-Acetylgalactosamine-4-Sulfatase (administration & dosage, therapeutic use)
  • Physicians
  • Recombinant Proteins (administration & dosage, therapeutic use)
  • United States

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