I. About your HAE centre
The purpose of this part of the questionnaire is to characterize your HAE centre in order to better
understand your situation and experience.
1. What country do you work in?
______________________________
2. Which medical department do you work in?
__________________________________
3. What is the percentage of your HAE patients in relation to all patients of your centre?
☐ less than 5 %
☐ between 5 and 10 %
☐ between 10 and 20 %
☐ more than 20 %
4. How many patients with HAE do you have in your centre?
☐ less than 10
☐ between 10 and 25
☐ between 25 and 50
☐ more than 50
5. Is your HAE service for children, adults, or both?
☐ children only
☐ adults only
☐ children and adults
6. Which kind of treatment does your HAE centre offer to the patients?
☐ treatment of attacks
☐ prophylaxis for attacks
☐ home-self-treatment
Any comments:
___________________________________________________________________
7. At your centre, how many nurses are involved in HAE treatment?
___________________________________________________________________
II. About You
1. How many years have you been qualified as a nurse?
☐ less than 2 years
☐ between 2 and 5 years
☐ between 5 and 10 years
☐ between 10 and 20 years
☐ more than 20 years
2. How many years have you worked with HAE patients?
☐ less than 2 year
☐ between 2 and 5 years
☐ between 5 and 10 years
☐ between 10 and 20 years
☐ more than 20 years
3. Is your job full-time?
☐ yes
☐ no
4. What percentage of your time is spent with HAE patients?
☐ less than 10 %
☐ between 10 and 20 %
☐ between 20 and 30 %
☐ more than 30 %
5. What is your highest educational qualification?
☐ nursing assistant
☐ examined nurse
☐ others: _____________________________________________________
III. Nursing Practice
This page is about what you actually do in your work with HAE patients.
1. Which of the following do you do?
☐ Patient assessment
☐ Treatment
☐ Patient and family education
☐ Patient and family support
☐ Coordination of care
☐ Staff education
☐ Research
☐ Other (please specify): ______________________________________________
2. Patient assessment: Do you do the following?
☐ General nursing assessment
☐ Initial assessment of swelling episode
☐ Review the progress of therapy
☐ Assessment of venous access
☐ Assessment of pain
☐ Psychological assessment using validated tools
☐ Other (please specify): ______________________________________________
3. How did you learn to do these assessments?
☐ General nursing
☐ assessment Initial
☐ assessment of swelling
☐ Review of progress of therapy
☐ Assessment of pain
☐ Assessment of venous access
☐ Psychological assessment
Basic nurse
training ☐ ☐ ☐ ☐ ☐ ☐
Training course ☐ ☐ ☐ ☐ ☐ ☐
From colleagues ☐ ☐ ☐ ☐ ☐ ☐
Self-taught ☐ ☐ ☐ ☐ ☐ ☐
4. Treatment: Do you do the following?
☐ Prepare and draw up C1-INH concentrate and other treatments
☐ Administer these treatments
☐ Access vein by veinepuncture
☐ Use intravenous access devices e.g. Port-a-cath
☐ Advice patients on treatment doses
☐ _____________________________________________________________
5. Patient and family education: Do you do the following?
☐ Education about HAE
☐ Home treatment training
☐ Other (please specify): _____________________________________________
6. Patient and family support: Do you do the following?
☐ Provide telephone advice
☐ Provide home visits for home treatment training
☐ Offer school visits
☐ Participate in group support
☐ Do you supply the patient with patient diary
☐ Do you supply the patient with patient infocard
☐ Do you written information for GP, Pharmacist
☐ Do you have patient registry
☐ Other (please specify): _____________________________________________
7. Coordination of care: Do you do the following?
☐ Liaise with multidisciplinary team
☐ Make referrals to other healthcare professionals
☐ Organize care outside the centre, e.g. schools, other hospital, local services
☐ Other (please specify): _____________________________________________
8. Research: Do you do the following?
☐ Assist with clinical trials on C1-INH concentrates
☐ Assist with other research
☐ Conduct nursing research
☐ Other (please specify): _____________________________________________
9. Are there other important aspects of your job? If yes, please specify.
__________________________________________________
IV. How you learnt to do your job and how you continue to learn
1. How did you learn to be a HAE nurse?
Please give each a score, from the lease useful (1) to the most useful (6)
1 (least useful) 2 3 4 5 6 (most useful)
From physicians (HAE treaters) ☐ ☐ ☐ ☐ ☐ ☐
From other nurses ☐ ☐ ☐ ☐ ☐ ☐
From patients ☐ ☐ ☐ ☐ ☐ ☐
By attending national and international meetings ☐ ☐ ☐ ☐ ☐ ☐
Learning by doing ☐ ☐ ☐ ☐ ☐ ☐
By own study ☐ ☐ ☐ ☐ ☐ ☐
Other (please specify): _________________________ ☐ ☐ ☐ ☐ ☐ ☐ ☐