Advances in ITP - therapy and quality of life - a patient survey.

Current guidelines recommend glucocorticoids and splenectomy as
standard 1(st) and 2(nd) line treatments for chronic immune
thrombocytopenia (ITP). We sought to find out how German
ITP-patients are treated with respect to these guidelines. Members
of a patient support association ≥18 years with a self-reported
history of chronic ITP>12 months were surveyed with a web-based
questionnaire. 122 questionnaires were evaluated. 70% of patients
had chronic ITP for more than 5 years and 20% an average platelet
count of ≤30·10(9)/L. 41% of the patients reported haematomas or
petechiae more than once or twice and up to 12 times or more per
year and 17% oropharyngeal and nasal bleeds. 11% had been admitted
to hospital during the last 12 months. 88% had received or
currently receive glucocorticoids, 27% were splenectomised. IVIG
had been given to 55%, rituximab to 22%, anti-D to 12%, ciclosporin
to 7%, while complementary and alternative medical treatments had
been used by 36%. 50 women responded to questions concerning
pregnancy. 14 (28%) had been advised not to become pregnant. 23
reported pregnancies and 10 (44%) required treatment for their ITP
during pregnancy. Glucocorticoids are the most common therapy for
chronic ITP but complementary and alternative treatments already
come second and less than ⅓ of patients are splenectomised. This
and the frequent use of complementary medicines suggests patients'
dissatisfaction with conventional approaches. Many patients receive
off-label therapies. There is a major need for adequate counselling
and care for pregnant ITP-patients.