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

Background Current guidelines recommend glucocorticoids and splenectomy as standard 1st and 2nd 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...

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Hauptverfasser: Matzdorff, Axel (VerfasserIn) , Arnold, Gabriele (VerfasserIn) , Salama, Abdulgabar (VerfasserIn) , Ostermann, Helmut (VerfasserIn) , Weigold, Sonja (VerfasserIn) , Hummler, Simone (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: November 11, 2011
In: PLOS ONE
Year: 2011, Jahrgang: 6, Heft: 11, Pages: 1-6
ISSN:1932-6203
DOI:10.1371/journal.pone.0027350
Online-Zugang:Verlag, lizenzpflichtig, Volltext: https://doi.org/10.1371/journal.pone.0027350
Verlag, lizenzpflichtig, Volltext: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0027350
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Verfasserangaben:Axel C. Matzdorff, Gabriele Arnold, Abdulgabar Salama, Helmut Ostermann, Sonja Eberle, Simone Hummler

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520 |a Background Current guidelines recommend glucocorticoids and splenectomy as standard 1st and 2nd 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 ≤30·109/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. Conclusion 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. 
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650 4 |a Idiopathic thrombocytopenic purpura 
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