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Questionnaire for Patients with Hemophilia

Dear Respondents,

My name is Veronika Horváthová and I am a student at the Faculty of Health and Social Work of St. Ladislav in Nové Zámky. This questionnaire is part of my bachelor’s thesis entitled “Management of a patient with hemophilia.”

The aim of this questionnaire is to obtain information about the experiences, knowledge, and ways of managing the disease among patients with hemophilia, in order to better understand patients’ needs and propose recommendations for practice.


The questionnaire consists of several sections:

1. Personal data- basic information about age, gender, and type of hemophilia.

2. Knowledge about hemophilia- questions concerning your knowledge of the disease, its symptoms, and treatment.

3. Information and treatment- questions focused on how well you understand your treatment and how you manage it.

4. Self-management- questions about your practical skills in managing hemophilia (e.g., factor administration, bleeding plan, physical activity).

5. Experience with healthcare- questions about cooperation with the healthcare team, availability of treatment, and social support.

6. Participation in a patient organization- questions about membership in a hemophilia association and its benefits for you.


Your answers will be anonymous and used only for the purposes of this bachelor’s thesis. The questionnaire is not time-consuming and takes approximately 10-15 minutes. Please answer honestly and according to your real experiences. There are no “right” or “wrong” answers - the aim is to obtain a realistic picture of hemophilia management and support improvements in patient care.


Thank you for your time and willingness to participate in this survey!

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Personal Data

1

What is your age?

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2

What is your gender?

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3

What type of hemophilia do you have?

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4

At what period of life / age were you diagnosed with hemophilia?

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5

Do you attend a hemophilia center or a specialized hematology clinic?

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6

Do you experience the following symptoms of hemophilia?

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Knowledge about Hemophilia

7

Hemophilia is mostly hereditary. Which chromosome is most often involved?

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8

Which factors may be deficient in hemophilia?

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9

What type of treatment is commonly used for hemophilia?

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Patient Information

10

Have you received written informational materials about your condition from your hematologist or healthcare staff?

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11

Do you understand the treatment you receive?

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12

What steps do you take when bleeding occurs?

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13

Do you know what inhibitors are and what they mean for your treatment?

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14

Have you been informed about the possibilities of gene therapy for hemophilia?

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15

What type of hemophilia treatment are you currently receiving?

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Self-Management of Treatment

16

Have you been trained to properly reconstitute and administer the factor (e.g., preparation of the powder, dilution, use)?

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17

Do you know how to properly store your factor concentrate medication (temperature, protection from sunlight, shelf life after reconstitution)?

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18

If you have experience with bleeding, do you have a plan (instructions) for what to do when bleeding occurs?

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19

Do you regularly consult your treatment plan with the healthcare team (hematologist, nurse, physiotherapist, etc.)?

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20

Do you include physical activity/exercise in your life as part of managing your condition?

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Experience with Healthcare

21

How often do you visit a hemophilia center or a hematologist?

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22

Do you feel that the healthcare staff (doctors, nurses) listen to your concerns and needs?

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23

If you had a bleeding episode, was the medication available quickly (at the time you needed it)?

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24

Do you have access to psychological or social support (e.g., therapist, social worker, patient group)?

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25

Are you satisfied with the overall care you receive for your hemophilia?

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26

Are you a member of a hemophilia association or organization?

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27

If yes, has the association helped you in managing your condition? (You may mark more than one option; if you are not a member, skip this question.)

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