title: Advances in ITP--therapy and quality of life--a patient survey.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Haematology, Caritasklinik St. Theresia, Saarbruecken, Germany. a.matzdorff@caritasklinik.de
authors.forename: Axel C
authors.initials: AC
authors.lastname: Matzdorff
authors.forename: Gabriele
authors.initials: G
authors.lastname: Arnold
authors.forename: Abdulgabar
authors.initials: A
authors.lastname: Salama
authors.forename: Helmut
authors.initials: H
authors.lastname: Ostermann
authors.forename: Sonja
authors.initials: S
authors.lastname: Eberle
authors.forename: Simone
authors.initials: S
authors.lastname: Hummler
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D005858:Germany; D005938:Glucocorticoids / Q000627:therapeutic use; D006801:Humans; D008297:Male; D008875:Middle Aged; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000188:drug therapy* / Q000601:surgery*; D011788:Quality of Life; D013156:Splenectomy; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D005938:Glucocorticoids
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