The use of standardized patient questionnaires in hereditary angioedema

Introduction Hereditary angioedema (HAE) is characterized by recurrent edema of the skin and mucosa, which is often completely unexpected. The swellings can be painful, cosmetically disfiguring, functionally impairing, or even life-threatening if the airways are constricted. In addition to the possible physical limitations, there is almost always a reduction in the quality of life of those affected. Like the disease itself, the way it is dealt with is very individual. In order to better assess and understand the disease situation of each individual, the use of standardized patient questionnaires is extremely useful.

Methods Currently available questionnaires allow the assessment of disease activity and control and the impact of the disease on quality of life. The following are used in HAE: the AECT = Angioedema Control Test, the AE-QoL = Angioedema Quality of Life Questionnaire and the ASS=Angioedema Activity Score. All questionnaires are validated, available in German and are completed independently by the patients.

Results The questionnaires represent health complaints and quality of life limitations as well as changes under therapy. They should be completed about once a quarter, but at least at every check-up.

Discussion The standardized questionnaires allow a very good documentation and evaluation of the individual disease situation and help to recognize and justify a necessary change in therapy. They should be used regularly in the treatment, not only, of patients with HAE.

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Artikel online veröffentlicht:
12. Mai 2023