Children and adults with primary antibody deficiencies gain quality of life by subcutaneous IgG self-infusions at home

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dc.contributor.authorGardulf, Ann
dc.contributor.authorNicolay, Uwe
dc.contributor.authorAsensio, Oscar
dc.contributor.authorBernatowska, Ewa
dc.contributor.authorBock, Andreas
dc.contributor.authorCosta-Carvalho, Beatriz Tavares [UNIFESP]
dc.contributor.authorGranert, Carl
dc.contributor.authorHaag, Stefan
dc.contributor.authorHernandez, Dolores
dc.contributor.authorKiessling, Peter
dc.contributor.authorKus, Jan
dc.contributor.authorMatamoros, Nuria
dc.contributor.authorNiehues, Tim
dc.contributor.authorSchmidt, Sigune
dc.contributor.authorSchulze, Ilka
dc.contributor.authorBorte, Michael
dc.contributor.institutionKarolinska Univ Hosp
dc.contributor.institutionConsorcio Hosp Parc Tauli
dc.contributor.institutionChildrens Mem Hlth Inst
dc.contributor.institutionUniv Vienna
dc.contributor.institutionUniversidade Federal de São Paulo (UNIFESP)
dc.contributor.institutionZLB Behring GMBH
dc.contributor.institutionHosp Univ La Fe
dc.contributor.institutionNatl Res Inst TB & Lung Dis
dc.contributor.institutionHosp Univ Son Dureta
dc.contributor.institutionUniv Klinikum Dusseldorf
dc.contributor.institutionUniv Freiburg
dc.contributor.institutionHumboldt Univ
dc.contributor.institutionUniv Leipzig
dc.date.accessioned2016-01-24T12:37:23Z
dc.date.available2016-01-24T12:37:23Z
dc.date.issued2004-10-01
dc.description.abstractBackground: A large number of children and adults with primary antibody deficiencies need lifelong IgG replacement therapy. It is mostly unknown what effect the choice of replacement therapy has on the patients' health-related quality of life (HRQOL) and treatment satisfaction (TS).Objective: To investigate whether a switch from hospital-based intravenous IgG (IVIG) to home-based subcutaneous IgG (SCIG) therapy would improve the HRQOL and TS.Methods: Fifteen children (<14 years; hospital-based IVIG therapy at enrollment) and 32 adults (greater than or equal to14 years; 22 on hospital-based IVIG and 10 on home-based SCIG therapy at enrollment) were included. Questionnaires were completed at baseline and at 6 and 10 months: the Child Health Questionnaire-Parental Form 50 (children) or Short Form 36 (adults), the Life Quality Index, and questions regarding therapy preferences.Results: the SCIG home therapy was reported to give better health (P = .001) and improved school/social functioning (P = .02) for the children, reduced emotional distress (P = .02) and limitations on personal time for the parents (P = .004), and fewer limitations on family activities (P = .002). Adults switching therapy reported improved vitality (P = .04), mental health (P = .05), and social functioning (P = .01). Adults already on SCIG home therapy at enrollment retained high HRQOL and TS scores. the SCIG home therapy improved TS because it led to greater independence and better therapy convenience (P <.05). the patients preferred the SCIG administration route and having the treatment at home.Conclusions: Home-based SCIG therapy improves several important aspects of HRQOL and provides the patients with primary antibody deficiencies and their families with greater independence and better control of the therapy situation and daily life. SCIG home therapy is an appreciated therapeutic alternative for adults and children in need of lifelong IgG replacement therapy.en
dc.description.affiliationKarolinska Univ Hosp, Swedish Ctr Immunodeficiencies, Div Clin Immunol, Dept Lab Med, SE-14186 Stockholm, Sweden
dc.description.affiliationConsorcio Hosp Parc Tauli, Serv Immunol Clin, Sabadell, Spain
dc.description.affiliationChildrens Mem Hlth Inst, Dept Immunol, Warsaw, Poland
dc.description.affiliationUniv Vienna, Klin Kinder & Jugendheilkunde, Vienna, Austria
dc.description.affiliationUniversidade Federal de São Paulo, Dept Pediat, Div Rheumatol Allergy & Clin Immunol, São Paulo, Brazil
dc.description.affiliationKarolinska Univ Hosp, Clin Immunol Sect, Immunodeficiency Unit, SE-14186 Stockholm, Sweden
dc.description.affiliationZLB Behring GMBH, Marburg, Germany
dc.description.affiliationHosp Univ La Fe, Dept Allergy, Valencia, Spain
dc.description.affiliationNatl Res Inst TB & Lung Dis, Warsaw, Poland
dc.description.affiliationHosp Univ Son Dureta, Serv Immunol, Palma de Mallorca, Spain
dc.description.affiliationUniv Klinikum Dusseldorf, Klin Kinder Onkol Hamatol & Immunol, Dusseldorf, Germany
dc.description.affiliationUniv Freiburg, Med Klin, Abt Rheumatol & Klin Immunol, D-7800 Freiburg, Germany
dc.description.affiliationHumboldt Univ, Charite Berlin, Klin Padiat, Schwerpunkt Pneumol Immunol, Berlin, Germany
dc.description.affiliationUniv Leipzig, Akad Lehrkrankenhaus, Stadt Klinikum St Georg Leipzig, Klin Kinder & Jugendmed, Leipzig, Germany
dc.description.affiliationUnifespUniversidade Federal de São Paulo, Dept Pediat, Div Rheumatol Allergy & Clin Immunol, São Paulo, Brazil
dc.description.sourceWeb of Science
dc.format.extent936-942
dc.identifierhttp://dx.doi.org/10.1016/j.jaci.2004.06.053
dc.identifier.citationJournal of Allergy and Clinical Immunology. St Louis: Mosby, Inc, v. 114, n. 4, p. 936-942, 2004.
dc.identifier.doi10.1016/j.jaci.2004.06.053
dc.identifier.issn0091-6749
dc.identifier.urihttp://repositorio.unifesp.br/handle/11600/27945
dc.identifier.wosWOS:000224439100033
dc.language.isoeng
dc.publisherMosby, Inc
dc.relation.ispartofJournal of Allergy and Clinical Immunology
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectprimary immunodeficienciesen
dc.subjectsubcutaneous IgG therapyen
dc.subjectintravenous IgG therapyen
dc.subjectquality of lifeen
dc.subjecthome careen
dc.subjectpatient satisfactionen
dc.subjectself-careen
dc.subjectnursingen
dc.titleChildren and adults with primary antibody deficiencies gain quality of life by subcutaneous IgG self-infusions at homeen
dc.typeinfo:eu-repo/semantics/article
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