I. Information about your HAE center
1.What is your country?
2.What is your clinic affiliation?
3.How many years your center treat HAE patients?
4.How many patients are currently registered in your center?
5.How many adults?
6.How many children (<18)
7.How many nurses are involved in the treatment of HAE patients?
II. Personnal information
1.How many years have you been working as a nurse?
2.How many years have you been working with HAE patients?
4.What is your professional background?
Registered nurseAcademic degree (BA, MA etc)Licensed practical nurseNurse practitionerOther
III.About your practice
Please describe your role in the Center:
1.Patient assessment- checking if the patient is able to:
Recognize and evaluate swelling attacksIdentify early signs/symptoms (Prodroms)Assess degree of pain (scale)Assess the social/economic burden of diseaseAsses the psychologic burden of diseaseUnderstand the purpose of treatment
2.Assessing the patient and family needs
3.Patient and family training
Provide HAE diaryFinding and opening venous accessAdministering drugs at home (subcutaneous or intravenous)
4.Available to provide treatment when needed
5.Hospital staff education
7.Participating in the Center's clinical research
IV.The HAE international nurses organization
1.Do you support the idea of IHNO?
2.Are you willing to contribute?
Uploading presentationsUploading your papersJoining an international surveyDeveloping HAE nursing guidelinesOther ideas
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