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

被引:211
作者
Gardulf, A
Nicolay, U
Asensio, O
Bernatowska, E
Böck, A
Costa-Carvalho, BT
Granert, C
Haag, S
Hernández, D
Kiessling, P
Kus, J
Matamoros, N
Niehues, T
Schmidt, S
Schulze, I
Borte, M
机构
[1] Karolinska Univ Hosp, Swedish Ctr Immunodeficiencies, Div Clin Immunol, Dept Lab Med, SE-14186 Stockholm, Sweden
[2] Consorcio Hosp Parc Tauli, Serv Immunol Clin, Sabadell, Spain
[3] Childrens Mem Hlth Inst, Dept Immunol, Warsaw, Poland
[4] Univ Vienna, Klin Kinder & Jugendheilkunde, Vienna, Austria
[5] Univ Fed Sao Paulo, Dept Pediat, Div Rheumatol Allergy & Clin Immunol, Sao Paulo, Brazil
[6] Karolinska Univ Hosp, Clin Immunol Sect, Immunodeficiency Unit, SE-14186 Stockholm, Sweden
[7] ZLB Behring GMBH, Marburg, Germany
[8] Hosp Univ La Fe, Dept Allergy, Valencia, Spain
[9] Natl Res Inst TB & Lung Dis, Warsaw, Poland
[10] Hosp Univ Son Dureta, Serv Immunol, Palma de Mallorca, Spain
[11] Univ Klinikum Dusseldorf, Klin Kinder Onkol Hamatol & Immunol, Dusseldorf, Germany
[12] Univ Freiburg, Med Klin, Abt Rheumatol & Klin Immunol, D-7800 Freiburg, Germany
[13] Humboldt Univ, Charite Berlin, Klin Padiat, Schwerpunkt Pneumol Immunol, Berlin, Germany
[14] Univ Leipzig, Akad Lehrkrankenhaus, Stadt Klinikum St Georg Leipzig, Klin Kinder & Jugendmed, Leipzig, Germany
关键词
primary immunodeficiencies; subcutaneous IgG therapy; intravenous IgG therapy; quality of life; home care; patient satisfaction; self-care; nursing;
D O I
10.1016/j.jaci.2004.06.053
中图分类号
R392 [医学免疫学];
学科分类号
100102 ;
摘要
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.
引用
收藏
页码:936 / 942
页数:7
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