The Haemnet Haemophilia B Nurse Survey

There is some thought that haemophilia B is less clinically severe than haemophilia A.
With this survey we'd like to understand more about how you assess and manage haemophilia B. The results may be used to develop nurse and patient educational resources.
This questionnaire should only take you around 6 minutes to complete.
This project is facilitated and funded by Sobi.
This survey is anonymous, and any information collected in this survey will be shared only with Haemnet and Sobi. The information will be used to support education around haemophilia. The survey will be kept for as long as required for the purpose of the project, not longer than 12 months.

Question Title

* 1. In your opinion is there a difference between haemophilia A and B in respect to:

	Yes	No	Don't know
Bleeding phenotype	Bleeding phenotype Yes	Bleeding phenotype No	Bleeding phenotype Don't know
Treatment and management	Treatment and management Yes	Treatment and management No	Treatment and management Don't know
Long-term health	Long-term health Yes	Long-term health No	Long-term health Don't know
Nursing interventions	Nursing interventions Yes	Nursing interventions No	Nursing interventions Don't know

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* 2. Which centre are you at?

Optional

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* 3. For how many years have you worked in haemophilia care?

<1 year

2-5 years

6-10 years

11-20 years

>20 years

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* 4. How many haemophilia B patients do you care for

Severe

Moderate

Mild

Carriers / women with haemophilia B

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* 5. How many of these haemophilia B patients are on prophylaxis?

Severe

Moderate

Mild

Carriers / women with haemophilia B

Question Title

* 6. Does your physio see these patients to undertake joint assessments?

	Yes	No	Don't know
Severe	Severe Yes	Severe No	Severe Don't know
Moderate	Moderate Yes	Moderate No	Moderate Don't know
Mild	Mild Yes	Mild No	Mild Don't know
Carriers / women with haemophilia B	Carriers / women with haemophilia B Yes	Carriers / women with haemophilia B No	Carriers / women with haemophilia B Don't know

Question Title

* 7. Have you ever seen a haemophilia B patient with an inhibitor?

	Yes	No
Severe	Severe Yes	Severe No
Moderate	Moderate Yes	Moderate No
Mild	Mild Yes	Mild No
Carriers / women with haemophilia B	Carriers / women with haemophilia B Yes	Carriers / women with haemophilia B No

Do you currently have any haemophilia B patients with an inhibitor?

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* 8. Which of following products do you have experience with? (select all that apply)

Benefix (nonacog alfa)

Alprolix (eftrenonacog alfa)

Idelvion (albutrepenonacog alfa)

Refixia (nonacog beta pegol)

Others

Unknown

Question Title

* 9. How often are patients with haemophilia B seen in clinic?

Severe

Moderate

Mild

Carriers / women with haemophilia B

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* 10. Is this any different to patients with haemophilia A?

Yes (if so how)

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* 11. Did your patients on EHL initiate the switch themselves or was it a clinical decision?

Own decision

Clinical decision

Both

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* 12. Do your haemophilia B patients undergo PK testing

Yes

Never

Only when switching to an EHL

Is this the same as in your haemophilia A patients?

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* 13. Do you routinely measure trough levels in your haemophilia B patients at each clinic visit?

Yes

Is this the same as in your haemophilia A patients?

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* 14. How relevant do you feel FIX trough levels are as a marker of efficacy for haemophilia B?

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* 15. Are you aware of extravascular distribution of FIX in haemophilia B patients?

Yes

If so, please tell us what you understand about it

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* 16. What do you advise patients with haemophilia B on EHL prophylaxis to do if they have a bleeding episode?

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* 17. Do you use an EHL product to manage bleeds in ‘on-demand’ haemophilia B patients?

Yes

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* 18. For your haemophilia B patients on EHL products undergoing surgery, do you

	Yes	No
Manage them on their current product	Manage them on their current product Yes	Manage them on their current product No
Switch them to a standard half life product	Switch them to a standard half life product Yes	Switch them to a standard half life product No

Question Title

* 19. Who makes this decision

Nurse

Centre Director

Consultant

MDT decision

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* 20. Please use the sliding scale to show how confident are you in managing surgery using EHL products

Not confident

Average

Very confident

Clear

i We adjusted the number you entered based on the slider’s scale.

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* 21. What do you think is likely to be the optimal treatment for patients with severe haemophilia B in 2020?

Plasma derived factor

Standard half-life recombinant factor

EHL factor

Gene therapy

New novel therapies (Fitusiran/Concizumab)

Question Title

* 1. In your opinion is there a difference between haemophilia A and B in respect to:

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* 2. Which centre are you at?

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* 3. For how many years have you worked in haemophilia care?

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* 4. How many haemophilia B patients do you care for

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* 5. How many of these haemophilia B patients are on prophylaxis?

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* 6. Does your physio see these patients to undertake joint assessments?

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* 7. Have you ever seen a haemophilia B patient with an inhibitor?

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* 8. Which of following products do you have experience with? (select all that apply)

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* 9. How often are patients with haemophilia B seen in clinic?

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* 10. Is this any different to patients with haemophilia A?

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* 11. Did your patients on EHL initiate the switch themselves or was it a clinical decision?

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* 12. Do your haemophilia B patients undergo PK testing

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* 13. Do you routinely measure trough levels in your haemophilia B patients at each clinic visit?

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* 14. How relevant do you feel FIX trough levels are as a marker of efficacy for haemophilia B?

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* 15. Are you aware of extravascular distribution of FIX in haemophilia B patients?

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* 16. What do you advise patients with haemophilia B on EHL prophylaxis to do if they have a bleeding episode?

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* 17. Do you use an EHL product to manage bleeds in ‘on-demand’ haemophilia B patients?

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* 18. For your haemophilia B patients on EHL products undergoing surgery, do you

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* 19. Who makes this decision

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* 20. Please use the sliding scale to show how confident are you in managing surgery using EHL products

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* 21. What do you think is likely to be the optimal treatment for patients with severe haemophilia B in 2020?

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* 22. Do you think the needs of patients/families with haemophilia B are addressed in the same way as those with haemophilia A?

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* 23. What, if any, do you think are the unmet needs for people with haemophilia B?

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* 24. Is there anything about managing a person/family with haemophilia B that you need more information about?