The influence of hospital‐based intravenous immunoglobulin and home‐based self‐administrated subcutaneous immunoglobulin therapy in young children with primary immunodeficiency diseases on their parents’ / caregivers’ satisfaction

Abstract

Background Immunoglobulin replacement has been standard therapy for patients with primary immunodeficiency diseases (PIDD). Intravenous immunoglobin (IVIg) is delivered at the hospital, whereas subcutaneous immunoglobin (SCIg) is used for home‐based treatment. The aim of the study was to determine the advantages and disadvantages of IVIg and SCIg in Polish children aged 1–5 years, with PIDD, and the satisfaction of their parents / caregivers regarding immunoglobulin replacement. Methods The research involved parents of 23 children with PIDD, aged 1–5 years. All children were given IVIg therapy and after at least 6 months they were switched towards home SCIg therapy for at least 6 months. A questionnaire assessing advantages and disadvantages of preferred types of treatment and the quality of life of PIDD patients’ families’ lives was used. Results The research showed that IVIg therapy was better accepted by parents than SCIg therapy (P = 0.034) for the following reasons: It made it possible for the children to receive treatment once per month (60%); it reduced the fear of injecting the children (60%), and it provided better control of the disease through regular visits to the hospital (53.33%). Parents noticed, however, that IVIg had a significant impact on absence at school or work (70%). Parents who preferred SCIg for their children were guided mainly by the smaller number of side effects (40%), and the fact that the treatment did not interfere with parents’ work or the children’s school (40%). Conclusion The results showed that IVIg therapy was better accepted by parents than SCIg therapy Parents of children with SCIg are less satisfied with their life, and feel anxiety about their children disease, which is related to administering the medicine by themselves.

Parenteral Therapy in Domiciliary and Outpatient Setting: A Critical Review of the Literature

“…Conversely, in a study of children aged 1-5 years hospital IVIg therapy was preferred by parents over SCIg at home because of once-monthly treatment, fear of giving injections to children, and perceived better control of the disease when visiting the hospital regularly [23]. Families receiving IVIg reported greater satisfaction and less anxiety, even though IVIg therapy was associated with some disadvantages for them (e.g., increased absence from school or work).…”

“…IRT aims to raise the IgG levels in serum to normal concentrations, increase immune protection, reduce infections, improve QoL, and slowly reduce or arrest the progression of associated organ damage [22]. They can be administered either IV (IVIg) or SC (SCIg), and both can be performed in the home setting, although SCIg is more common in home care and IVIg is more common in hospitals [4,22,23]. SCIg is administered in smaller weekly doses, which results in lower peak and higher IgG trough levels compared to the higher doses of IVIg infusions with longer intervals between [21].…”

“…Families receiving IVIg reported greater satisfaction and less anxiety, even though IVIg therapy was associated with some disadvantages for them (e.g., increased absence from school or work). Those who preferred the SCIg therapy reported fewer side effects using this route [23], while it is considered more effective and safer than IVIg for children with PID [25]. Another study, in parents and older children (5-15 years of age), showed that parents were more satisfied with home-based SCIg compared to hospital-based IVIg [26].…”