Therapy for Chronic ITP in Germany - A Patient Survey.

Guidelines recommend glucocorticoids and splenectomy as standard 1^st and 2^nd line treatments for chronic ITP. We sought to find out how German ITP-patients are treated in respect of these guidelines.

Members of a patient support association >18 y with self-reported history of chronic ITP (>6 mo) were surveyed. A questionnaire was developed from literature review with clinician and patient input, and administered on-line.

123 questionnaires were evaluated. Age (median 51 years) and gender distribution (38% m, 62% f) are comparable to surveys from other countries. 70% of patients had chronic ITP for more than 5 years and 50% a “usual” platelet count of < 50.000/μl (20% < 30.000/μl). 69% had hematomas or petechiae within the last 12 months, 45% had oropharyngeal bleeds, and 11% had been admitted to a hospital within this year. 88% had received or receive glucocorticoids, 28% were splenectomized. IVIg was given to 55%, rituximab to 22%, anti-D to 11%, cyclosporine to 7%. Complementary and alternative medical treatments had been used by 36%. 38 women were under the age of 50 and 14 (36%) reported that they had been advised not to become pregnant. 23 became pregnant and 10 (44%) required ITP-treatment during their pregnancy.

Glucocorticoids are the most common therapy for chronic ITP but complementary and alternative treatments already come second and less than 1/3 of the patients are splenectomized. This and the frequent use of complementary medicines suggests dissatisfaction with conventional therapeutic approaches. Many patients receive off-label therapies (rituximab, anti-D, cyclosporine are not licensed for ITP in Germany). There is a major need for adequate counseling and care for pregnant ITP-patients.

Matzdorff:GlaxoSmithKline: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; AMGEN: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Roche: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Baxter: Consultancy, Honoraria. Off Label Use: Rituximab for chronic ITP Complementary medicines for ITP. Hummler:GlaxoSmithKline: Employment.