A Survey of the Etiology of Immune Thrombocytopenia (ITP)

Immune Thrombocytopenia (ITP) is a disease whose etiology remains unclear. Numerous socioeconomic, environmental, lifestyle, and genetic factors have been related to ITP, however their presence is variable and their relationship to ITP is not well understood. A questionnaire was created to study these relationships, to better understand what causes ITP and to relate this information to the course of disease, including response to treatment.

A literature search, 60 ITP patient interviews and multiple reviews by project coordinators, nurse practitioner, Platelet Disorder Support Association (PDSA) members, hematologists, and patients were performed to design a questionnaire. A pilot study was then conducted where 55 ITP patients from Cornell completed the questionnaire with the aim to further improve it.

The next step will be to post a final version on the PDSA web site for 1,000 patients to complete it so that a database can be created. The questionnaire will also be given to a non-ITP patient population to serve as controls.

A 30 minute 93 item questionnaire that encompasses both children and adult patients was developed. The questionnaire documents factors that correlate with ITP and were present prior to diagnosis with the disease. It documents whether any of these factors changed and the effect of this change on ITP symptoms (worsening or improving). Among the factors addressed are nationality; country where the patient grew up; income; occupational hazards; neighborhood (e.g. Urban, Suburban, etc.); changes in job/school (e.g. remodeling or building damage); exposure to environmental hazards; travel history; medications taken; accidents; animal bites; pets; diet (e.g. increase/decrease in daily caloric intake, eliminating a type of food); allergies; exercise; sleep; stress level/stress reduction activities; alcohol consumption; smoking; drug abuse; consumption of certain foods (e.g. tonic water, sugar substitutes); vitamin deficiencies; vaccinations; general health state and medical history; pregnancy; infections; past history and family history of blood diseases, bone marrow diseases, inflammatory diseases, malignancies, autoimmune disorders and platelet production disorders; and past surgeries/procedures/hospitalizations. A few quality of life factors are also documented, among these are: the patient’s understanding of the disease and treatment options, resources, support network and side effects to ITP treatment. Finally, the questionnaire documents the severity of ITP symptoms, treatments received for ITP and the patient’s response to these treatments.

This questionnaire is meant to capture a snapshot of different factors that correlate with ITP and treatment responses. It attempts to understand whether a patient’s response to different treatment modalities relates to the presence or absence of any of these factors. The questionnaire will also be given to a control group to see whether these socioeconomic, environmental, life-style and genetic factors are over-represented in ITP patients, when their prevalence is compared to a non-ITP population. This tool is meant to be broad in order to identify multiple significant factors that could be further investigated in more detail, and including molecular studies.

Bussel:Portola: Consultancy; Eisai: Consultancy, Membership on an entity’s Board of Directors or advisory committees, Research Funding; GlaxoSmithKline: Consultancy, Equity Ownership, Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau; Amgen: Equity Ownership, Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau; Cangene: Research Funding; Genzyme: Research Funding; Immunomedics: Research Funding; Ligand: Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau; Shionogi: Membership on an entity’s Board of Directors or advisory committees, Research Funding, Speakers Bureau; Sysmex: Research Funding.