Immunoglobulin use in immune deficiency in the UK: a report of the UKPID and National Immunoglobulin Databases

Abstract

Supply of immunoglobulin in the UK faces pressures due to increasing demand, cost and variable supply. This paper describes immunoglobulin replacement therapy (IGRT) in primary immunodeficiency (PID) and secondary immunodeficiency (SID) to assist in the ongoing planning of UK immunoglobulin provision. A retrospective analysis of the National Immunoglobulin Database and the UKPID registry was carried out. In total, 3,222 patients are registered as receiving IGRT for immunodeficiencies. Predominately antibody disorders made up the largest diagnostic category (61% of patients). The total cost of IGRT for immunodeficiency for 2015/16 was £40,673,350; an average annual cost of £1,099,254 per centre and £12,124 per PID patient. SCIg accounted for 43.8% and 50.1% of IGRT, with home therapy accounting for 42.7% and 57.5% of place of therapy in the National Immunoglobulin Database and UKPID registry respectively. In 2015/16 use of immunoglobulin in SID increased by 24% over the previous financial year. The overall trends of increasing demand in immunology are mirrored in other specialties, most notably neurology and haematology. These data are the first national overview of IGRT for immunodeficiencies, providing a valuable resource for clinicians and policy makers in the ongoing management of UK immunoglobulin supply.

Keywords: England; Immunoglobulin; immunodeficiency; intravenous; subcutaneous.

Fig 1.

Turkey box plot of Ig dose per centre (mg/kg/month). Each box represents median and IQR with range (whiskers) and outliers (dots). Top, middle and bottom horizontal dashed lines represent group 75th centile, median and 25th centile respectively.

Fig 2.

Ratio of route and place of IGRT. Median percentage for IVIg and hospital therapy usage demonstrated by the dashed, blackline. Centre numbers shown along the horizontal axis.

Fig 3.

Breakdown of site and location of IGRT by database.