Methods: Since 1999 SLIPI (Swedish Association for Physicians Interested in Immunodeficiency Diseases) in close cooperation with SISSI (Swedish Nurses Association for Primary Immunodeficiencies) and PIO (Patient Organization for PID) have implemented standard procedures for diagnostics, treatment and follow up, of various PIDs. There are biennial meetings to develop guidelines and consolidate treatment. A web-based register for healthcare professionals is used since 2012. A web-based Health Journal for the patients began February 2016. The screen-combination of the two registers mentioned above will be shown.
Results: As of August 25, 2016 there were 1637 patients with 16 different diagnoses registered. Most common diagnoses requiring IgG prophylaxis are CVID and IgG subclass deficiency.
Ninety patients with CVID were analyzed in this study. Their IgG substitution dose was median 115 mg/Kg/bodyweight and week (IQR 100 - 146 mg/Kg/bodyweight and week). Only 8 patients were substituted with less than the recommended dose of ≥100mg/Kg/bodyweight and week (range 80-99mg).
Ninty-eight pateints have been using the web-based patient diary and they are now registering symptoms such as cough, pain, fever, medication, days with infections and sickness leave as well as patient reported outcome (PROM) and patient reported experience (PREM).
Conclusions: The strength of having both the patient’s hospital file and her/his own health journal at the same screen being able to discuss all relevant finding at the visit will hopefully result in improved care, lead to better health related quality of life, and increased survival of the patients.