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Periodically, PDSA seeks opinions on various aspects of treating and living with ITP. Listed below are current surveys as well as the results from past surveys.
How has fatigue related to your ITP affected your life? We want to know!
PDSA is a partner organization with the American Autoimmune Related Diseases Association, Inc. (AARDA). AARDA does great work on behalf of the 50 million people who suffer with an autoimmune disease. They are conducting a survey of autoimmune disease patients to further explore the link between autoimmune diseases and fatigue. We hope you will take the time to respond to this short survey. PDSA will share the survey results with our members.
Thank you to those who shared your ITP experiences through our online survey, and thanks to GlaxoSmithKline for funding and developing the questionnaire.
A total of 1,002 ITP patients and 1,031 age and gender-matched controls answered questions from three standard quality-of-life questionnaires plus additional questions in a survey funded by Amgen. Selected results were published in three journal articles. Below are links to the abstracts. Contact PDSA for copies of the articles.
- “Impact of ITP on physician visits and workplace productivity.”
- “Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey.”
- “Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.”
From August, 2001 through December, 2001, we collected 916 responses to our Survey of Non-traditional Treatments of ITP. This survey was created by James Bussel, MD of the Weill Medical Center of Cornell University and the staff of the Platelet Disorder Support Association and placed on this web site to gather replies. Note: In the survey, the term 'non-traditional' is synonymous with 'complementary'. The survey also collected data on 'traditional' (conventional) therapies for comparison.
(Since these results are from a web-based survey, there is no medical validation of the results. For advice on your unique medical condition, please consult your health care provider. No portion of these results may be reproduced without express written consent of PDSA.)
The information on this Web site is for educational purposes only. For advice on your unique medical condition, please consult your healthcare professional.
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