The Texas Central Hemophilia Association (TexCen) is conducting a Women and Bleeding Disorders Survey to better gauge and assess the needs of women within its service area. 

TexCen wants to better understand what gaps there currently are regarding access to care, treatment, diagnosis and support related to women who are experiencing bleeding issues.  

We are asking for your assistance in the completion of this survey by May 18, 2018.

All responses will be kept confidential.  We sincerely appreciate your time and assistance with this project. 

Are you impacted by a bleeding disorder (you may select more than one)?

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* 1. Are you impacted by a bleeding disorder (you may select more than one)?

What type of bleeding disorder?

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* 2. What type of bleeding disorder?

What type of bleeding symptoms have you experienced (you may select more than one)?

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* 3. What type of bleeding symptoms have you experienced (you may select more than one)?

Have you had to have immediate medical care for any of the above mentioned issues?

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* 4. Have you had to have immediate medical care for any of the above mentioned issues?

What menstrual symptoms have been most impactful to you?

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* 5. What menstrual symptoms have been most impactful to you?

Frequency of bleeding symptoms (other than menstrual)?

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* 6. Frequency of bleeding symptoms (other than menstrual)?

Lifestyle. Please answer how your bleeding issue impacts your life in the following six areas:

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* 7. Lifestyle. Please answer how your bleeding issue impacts your life in the following six areas:

  Greatly Moderately Rarely Never Prefer not to answer/NA
Physical – Impacts ability to do sports, exercise, or has mobility issues.
Romantic – impacts ability to have fulfilled romantic life.
Reproductive – impacts ability to have children.
Social – impacts ability to an active and fulfilled social life with friends and family.
Work/Study – impacts ability to fully take part in work or school activities.
Psychological – impacts psychological health (such as depression, guilt, self-worth, ashamed, etc.)
How long have you been diagnosed with a bleeding disorder?

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* 8. How long have you been diagnosed with a bleeding disorder?

How long was the time between having bleeding symptoms and issues before you were diagnosed?

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* 9. How long was the time between having bleeding symptoms and issues before you were diagnosed?

Do you currently have insurance?

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* 10. Do you currently have insurance?

Are you seen by a private physician or by a Hemophilia Treatment Center (HTC)?

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* 11. Are you seen by a private physician or by a Hemophilia Treatment Center (HTC)?

If by a private physician, what type of physician?

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* 12. If by a private physician, what type of physician?

Do you feel your HTC or private physician are able to provide the appropriate level of care for you?

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* 13. Do you feel your HTC or private physician are able to provide the appropriate level of care for you?

  Yes Sometimes No Unsure
Knows my condition and how it is to be treated
Understands how this diagnosis may impact my daily life
Understands how to properly manage my disorder
Provides me with medical and/or social support to manage my disorder
Listens to my concerns and answers my questions
Spends enough time with me during office visits
Easy to get an appointment to see doctor or specialist
What type of treatment are you, or the person you are the caregiver for, receiving for their bleeding disorder (you may select more than one)?

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* 14. What type of treatment are you, or the person you are the caregiver for, receiving for their bleeding disorder (you may select more than one)?

Do you feel you have adequate access to care (i.e. tests, treatments, medication, and specialists) and information on bleeding disorders in your area? With 1 being the lowest to 5 being the highest.

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* 15. Do you feel you have adequate access to care (i.e. tests, treatments, medication, and specialists) and information on bleeding disorders in your area? With 1 being the lowest to 5 being the highest.

What types of programs (educational, social, age-specific, etc.) do you feel would be of most interest to you?

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* 16. What types of programs (educational, social, age-specific, etc.) do you feel would be of most interest to you?

Please list specific topics related to bleeding disorders or in general that you would personally like to see addressed in educational programming?

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* 17. Please list specific topics related to bleeding disorders or in general that you would personally like to see addressed in educational programming?

Are you aware that there are organizations that supports those affected by a bleeding disorder in Texas?

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* 18. Are you aware that there are organizations that supports those affected by a bleeding disorder in Texas?

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