Treatment of chronic immune thrombocytopenic purpura: the patients' perspective.

Background: The 1996 ASH guidelines recommend glucocorticoids and splenectomy as standard treatment of chronic immune thrombocytopenic purpura (ITP). We sought to find out how many German ITP-patients were treated according to these guidelines and whether high-cost treatments were offered to the patients.

Methods: We handed out a questionnaire at two self-help group meetings in 2004 and 2005 and to all patients who contacted the ITP self-help group until the end of 2005.

Results: Eighty-five questionnaires were evaluated. Age (median 34 yr) and gender distribution (38% male, 62% female) were similar to other surveys. Median duration of disease was 5.2 yr. Seventy-five percent had platelets <20,000/microL at the time of diagnosis. Twenty-four percent still had <20,000 platelets/microL at the time of this survey. Forty-two percent had oropharyngeal mucosal bleeds, 28% gastrointestinal or urological bleeds, 11% bleedings in the eye with visual impairment or intracerebral bleeds. 96% had received a trial of glucocorticoid therapy. Seventy-five percent of the patients treated with glucocorticoids perceived this treatment as particularly bothersome. Seventy-five percent of the patients with low platelet count still had their spleen. Complementary and alternative medical treatments had been used by 46% of the patients. Only 33% of the patients had ever heard of rituximab.

Conclusion: Despite literature suggesting that patients wish to be well informed this survey shows that chronic ITP patients know little about their disease and the various treatment modalities. This and the frequent use of complementary and alternative medicines reflects inadequate communication between doctors and ITP patients.