It’s long-term, well it’s for life basically: Understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders

This paper describes the burden of receiving immunoglobulin (Ig) treatment from perspective patients diagnosed with a Primary Immunodeficiency (PID). Thirty semi-structured interviews intravenous (n=21) and subcutaneous (n=9) therapy, either at home or in hospital were undertaken. Underpinned by phenomenological theoretical framework, using qualitative, inductive thematic approach to prioritise patients’ concerns, we identified that Ig requires considerable effort patient, particularly relation amount time, organization planning is needed. They also face numerous physical, social, relationship, emotional, role functioning, travelling, financial challenges their undergo maintain infusions care for health. Some qualitative differences noted between settings which contributed non-adherence those regimes. Immunoglobulin complex influenced therapeutic mode setting personal circumstances patient. As choice over method appears be mainly informed lifestyle needs, PID may benefit more information about these potential influences when selecting form take together health professional.