Children and adults with primary antibody deficiencies gain quality of life by subcutaneous IgG self-infusions at home - 25/08/11
, Uwe Nicolay, Dipl, Math a, Oscar Asensio, MD b, Ewa Bernatowska, MD, PhD c, Andreas Böck, MD d, Beatriz T. Costa-Carvalho, MD e, Carl Granert, MD, PhD f, Stefan Haag, MD, PhD g, Dolores Hernández, MD, PhD h, Peter Kiessling, PhD g, Jan Kus, MD, PhD i, Nuria Matamoros, MD, PhD j, Tim Niehues, MD, PhD k, Sigune Schmidt, MD l, Ilka Schulze, MD, PhD m, Michael Borte, MD, PhD n
Reprint requests: Ann Gardulf, Karolinska University Hospital, Huddinge, M96, SE-141 86 Stockholm, Sweden.Stockholm, Sweden, Sabadell, Valencia, and Palma de Mallorca, Spain, Warsaw, Poland, Vienna, Austria, São Paolo, Brazil, and Marburg, Düsseldorf, Freiburg, Berlin, and Leipzig, Germany
Résumé |
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 (≥14 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.
Le texte complet de cet article est disponible en PDF.Key words : Primary immunodeficiencies, subcutaneous IgG therapy, intravenous IgG therapy, quality of life, home care, patient satisfaction, self-care, nursing
Abbreviations used : CHQ-PF50, HRQOL, IVIG, LQI, PAD, SCIG, SF-36, TS
Plan
| Supported by ZLB Behring GmbH, Marburg, Germany (formerly Aventis Behring GmbH). Disclosure of potential conflict of interest: The local study coordinators received honoraria and/or travel grants from Aventis Behring GmbH, Marburg, Germany. At the time of the study, U. Nicolay, S. Haag, and P. Kiessling were employed by Aventis Behring GmbH. |
Vol 114 - N° 4
P. 936-942 - octobre 2004 Retour au numéro
Article précédent
- “Receive tables of contents by e-mail” box
- Modulation of allergic responses in mice by using biodegradable poly(lactide-co-glycolide) microspheres
- Samantha Jilek, Elke Walter, Hans P. Merkle, Blaise Corthésy
Bienvenue sur EM-consulte, la référence des professionnels de santé.
L’accès au texte intégral de cet article nécessite un abonnement.
Déjà abonné à cette revue ?