Surveys

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.

Patient Experience in Immune Thrombocytopenia (PETS) – An Exploratory Study

You are invited to participate in a research study of patients with Immune Thrombocytopenia (ITP) to understand your physical, social, and emotional well-being related to ITP. This study is being conducted by a pharmaceutical company and their goal for this study is to look for ways to understand issues with current therapies that might be improved by future treatments. The study is limited to adults aged 18 and over.

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Health-Related Quality of Life

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.”
     View Abstract

  • “Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey.”
     View Abstract

  • “Impact of corticosteroid-related symptoms in patients with immune thrombocytopenic purpura: results of a survey of 985 patients.”
     View Abstract

Survey of Non-Traditional Treatments of ITP

Introduction

From August, 2001 through December, 2001, we collected 916 responses from 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 (PDSA) and placed on the PDSA website 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.)

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