Intravenous enzyme replacement therapy: hospital vs home

British Journal of Nursing : BJN
R PariniMiriam Rigoldi

Abstract

Two surveys were carried out to establish the status of enzyme replacement therapy (ERT) for lysosomal storage diseases in Italy. The first was a national survey covering the regional reference centres (RRCs) for these diseases; replies disclosed that 57.7% of patients are on ERT, administered almost exclusively in hospital settings (local hospital 60.7%, RRC 34.8%, home 2.6%); Italian health service procedures do not support ERT at home. The second survey was a regional survey in Lombardy, involving 48 patients (six of whom were on ERT at home). According to 40% of the patients, hospital-based ERT is disruptive, causing loss of days at school/work, stress and family issues. The patients on home therapy did not have these problems. However, 93% of patients receiving ERT in hospital perceived the advantages of greater safety, closer monitoring and more support from health professionals and experts. A total of 55% were willing to receive ERT at home, but 33% were against it. This may be the result of a lack of experience with ERT at home in Italy, or because of different opinions between family members and physicians. As international experience shows that ERT at home saves healthcare resources and improves quality of life, the i...Continue Reading

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Citations

Jan 22, 2013·Molecular Genetics and Metabolism·B E SmidG E Linthorst
Dec 1, 2010·Acta Paediatrica·U RamaswamiM Beck
Dec 20, 2013·British Journal of Nursing : BJN·Becky Stephens
Feb 10, 2021·Fortschritte der Neurologie-Psychiatrie·Andreas HahnBenedikt Schoser

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