Women and Bleeding Disorders Survey

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.

Question Title

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

Yes. I am a woman with a bleeding disorder

Yes. I am the parent and primary caregiver of a child with a bleeding disorder.

I have been told I am a carrier of a bleeding disorder.

I have bleeding issues but have not been diagnosed with a disorder.

There is a history of bleeding disorders in my family.

Don’t know.

Question Title

* 2. What type of bleeding disorder?

Von Willebrand Disease (vWD) – Type 1 or 2

Von Willebrand Disease (vWD) – Type 3

Hemophilia A (Factor VIII) - mild or moderate

Hemophilia A (Factor VIII) - severe

Hemophilia B (Factor IX) - mild or moderate

Hemophilia B (Factor IX) - severe

Hemophilia C

Acquired Hemophilia

Acquired von Willebrand disease

Platelet disorder

Other factor deficiency

Unsure/Undiagnosed

Other (please specify what type of platelet or factor deficiency if known)

Question Title

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

Nosebleeds

Prolonged bleeding (takes more that 10 minutes to clot)

Bleeding from dental work

Easy bruising

Bleeding excessively after childbirth

Bleeding with ovulation

Joint bleeds

Joint pain

Other (please specify)

Question Title

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

Yes

Unsure

Prefer not to answer/NA

Question Title

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

Bleeding more than 7 days

Using more than one product at a time

Needing to change pad or tampon every hour

Clots larger than quarter

N/A

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

Frequent

Occasional

Rare

Only in cases related to an incident (accident, surgery, or injury)

Question Title

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

Question Title

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

Have not been diagnosed or had factor level testing performed

Less than 1 year

1-5 years

6-10 years

10+ years

Question Title

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

Have not been diagnosed

Less than 1 year

1-5 years

6-10 years

10+ years

Question Title

* 10. Do you currently have insurance?

Yes – Private or Company Health Plan

Yes – Marketplace/Exchange

Yes – Medicaid or Medicare

Question Title

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

Private

HTC

Question Title

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

Pediatrician

General practitioner

OB/Gynecologist

Hematologist

Oncologist

Other (please specify)

Question Title

* 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	Knows my condition and how it is to be treated Yes	Knows my condition and how it is to be treated Sometimes	Knows my condition and how it is to be treated No	Knows my condition and how it is to be treated Unsure
Understands how this diagnosis may impact my daily life	Understands how this diagnosis may impact my daily life Yes	Understands how this diagnosis may impact my daily life Sometimes	Understands how this diagnosis may impact my daily life No	Understands how this diagnosis may impact my daily life Unsure
Understands how to properly manage my disorder	Understands how to properly manage my disorder Yes	Understands how to properly manage my disorder Sometimes	Understands how to properly manage my disorder No	Understands how to properly manage my disorder Unsure
Provides me with medical and/or social support to manage my disorder	Provides me with medical and/or social support to manage my disorder Yes	Provides me with medical and/or social support to manage my disorder Sometimes	Provides me with medical and/or social support to manage my disorder No	Provides me with medical and/or social support to manage my disorder Unsure
Listens to my concerns and answers my questions	Listens to my concerns and answers my questions Yes	Listens to my concerns and answers my questions Sometimes	Listens to my concerns and answers my questions No	Listens to my concerns and answers my questions Unsure
Spends enough time with me during office visits	Spends enough time with me during office visits Yes	Spends enough time with me during office visits Sometimes	Spends enough time with me during office visits No	Spends enough time with me during office visits Unsure
Easy to get an appointment to see doctor or specialist	Easy to get an appointment to see doctor or specialist Yes	Easy to get an appointment to see doctor or specialist Sometimes	Easy to get an appointment to see doctor or specialist No	Easy to get an appointment to see doctor or specialist Unsure

Question Title

* 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)?

Infusions of plasma-derived factor concentrate

Infusions of plasma-derived factor concentrate and vWD factor

Infusions of vWD factor

Infusions of recombinant factor

DDAVP IV

Stimate

Transfusion or fresh frozen plasma of FFP

Transfusion of platelet concentrate

Transfusion of cryoprecipitate

Lysteda or Tranexamic acid

Amicar (aminocaproic acid)

Hormones

Unsure

I’m not receiving any treatment to manage my bleeding disorder

Question Title

* 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.

Any specific issues (please specify)?

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

Educational

Social

Age-Specific

A mix of everything

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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?

Question Title

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

Yes

No, but I would like more information - please contact me (name, email or phone):