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

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

Autor Gardulf, Ann Google Scholar
Nicolay, Uwe Google Scholar
Asensio, Oscar Google Scholar
Bernatowska, Ewa Google Scholar
Bock, Andreas Google Scholar
Costa-Carvalho, Beatriz Tavares Autor UNIFESP Google Scholar
Granert, Carl Google Scholar
Haag, Stefan Google Scholar
Hernandez, Dolores Google Scholar
Kiessling, Peter Google Scholar
Kus, Jan Google Scholar
Matamoros, Nuria Google Scholar
Niehues, Tim Google Scholar
Schmidt, Sigune Google Scholar
Schulze, Ilka Google Scholar
Borte, Michael Google Scholar
Instituição Karolinska Univ Hosp
Consorcio Hosp Parc Tauli
Childrens Mem Hlth Inst
Univ Vienna
Universidade Federal de São Paulo (UNIFESP)
ZLB Behring GMBH
Hosp Univ La Fe
Natl Res Inst TB & Lung Dis
Hosp Univ Son Dureta
Univ Klinikum Dusseldorf
Univ Freiburg
Humboldt Univ
Univ Leipzig
Resumo Background: 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.
Palavra-chave primary immunodeficiencies
subcutaneous IgG therapy
intravenous IgG therapy
quality of life
home care
patient satisfaction
self-care
nursing
Idioma Inglês
Data de publicação 2004-10-01
Publicado em Journal of Allergy and Clinical Immunology. St Louis: Mosby, Inc, v. 114, n. 4, p. 936-942, 2004.
ISSN 0091-6749 (Sherpa/Romeo, fator de impacto)
Publicador Mosby, Inc
Extensão 936-942
Fonte http://dx.doi.org/10.1016/j.jaci.2004.06.053
Direito de acesso Acesso aberto Open Access
Tipo Artigo
Web of Science WOS:000224439100033
Endereço permanente http://repositorio.unifesp.br/handle/11600/27945

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