The Netherlands Marianne van der Ent Jolanda van Esch Riet Strik Albers Dutch Nursing group for Immunodeficiency (LW-VID)
Practice in the Netherlands Estimated about 8500 patients (adults and children) with PID (16 million inhabitants). 60% of them have primary antibody deficiency. At this moment about 1000 patients with immunoglobulin-substitution. 20% SCIG 80% IVIG
Our role as nurse practitioner Informing patients about: His/her PID / lifestyle / traveling etc. Treatment options: SCIG versus IVIG. Home therapy versus hospital based therapy (difference between the hospitals). Sometimes there is an indication why a patient can not be treated at home.
Home therapy (teamwork) SCIG /HyQvia Patient / partner / parent on self infusion Training in the hospital. Training by the homecare nurse. IVIG Monitoring (sometimes during whole session) by homecare nurse. (Self infusion sometimes by partner / parent). 2 times on daycare, after that home therapy Samples for IgG through levels can be taken at home. Back-up is always possible in case of adverse events. Patient got instructions when and how to take rescue medication.
Equipment and costs All equipment (pumps-needles-tubes-lines etc) is provided and delivered at home. Medication is delivered at home. Trained homecare nurses go to the patient. All costs are taken care of by the health insurance company. Adults pay a low contribution (eigen bijdrage) per year ( 360 euro) children are for free.