Enzyme replacement therapy in the home setting for mucopolysaccharidosis vi: A survey of patient characteristics and physicians' early findings in the united states

Cynthia Tifft, Virginia Proud, Paul A. Levy, Kristin DeMarco, Helen Nicely, Sean Turbeville

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Galsulfase, a Food and Drug Administrationapproved 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.

Original languageEnglish (US)
Pages (from-to)45-52
Number of pages8
JournalJournal of Infusion Nursing
Volume32
Issue number1
DOIs
StatePublished - Jan 2009

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Mucopolysaccharidoses
Enzyme Replacement Therapy
Home Infusion Therapy
Mucopolysaccharidosis VI
Physicians
Ambulatory Care
Intravenous Infusions
Appointments and Schedules
Food
Surveys and Questionnaires
Pharmaceutical Preparations

ASJC Scopus subject areas

  • Nursing(all)
  • Medicine(all)

Cite this

Enzyme replacement therapy in the home setting for mucopolysaccharidosis vi : A survey of patient characteristics and physicians' early findings in the united states. / Tifft, Cynthia; Proud, Virginia; Levy, Paul A.; DeMarco, Kristin; Nicely, Helen; Turbeville, Sean.

In: Journal of Infusion Nursing, Vol. 32, No. 1, 01.2009, p. 45-52.

Research output: Contribution to journalArticle

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