Burden of Illness in Hereditary Angioedema: A Conceptual Model.
The objective of the Hereditary Angioedema Burden of Illness Study in Europe was to assess the real-world experience of hereditary angioedema (HAE) from the patient perspective. Based on open-ended qualitative interviews with 30 patients from Spain, Germany and Denmark, 5 key themes emerged characterizing the impact of HAE on health-related quality of life (HRQoL): (i) unnecessary treatments and procedures, (ii) symptom triggers, (iii) attack impacts, (iv) caregiver impacts, and (v) long-term impacts. Patients for example experience unnecessary medical procedures due to diagnostic delays; anxiety and fear about attacks, and passing HAE to children; reduced work/school productivity; and limited career/educational achievement. Patient caregivers also experience worry and work/activity interruption during the attacks. In conclusion, a conceptual model was developed illustrating the hypothesized relationships among the wide-ranging short- and long-term HRQoL impacts of HAE. These findings can be used to highlight important issues in clinical management, raise awareness of the patients' experience among policymakers and help guide measurement of HRQoL outcomes in future studies in HAE.
Department of Dermatology and Allergy Centre, Odense University Hospital, DK-5000 Odense, Denmark. anette.bygum@ouh.regionsyddanmark.dk, anette.bygum@hae.dk, anette.bygum@rsyd.dk.
Anette
A
Bygum
Emel
E
Aygören-Pürsün
Kathleen
K
Beusterien
Emily
E
Hautamaki
Zlatko
Z
Sisic
Suzanne
S
Wait
Henrik B
HB
Boysen
Teresa
T
Caballero
D000293:Adolescent; D000328:Adult; D000368:Aged; D054179:Angioedemas, Hereditary / Q000523:psychology*; D001007:Anxiety / Q000209:etiology; D017028:Caregivers / Q000523:psychology; D017281:Cost of Illness; D003718:Denmark; D004522:Educational Status; D004651:Employment; D005260:Female; D005858:Germany; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D036301:Qualitative Research; D011788:Quality of Life; D013030:Spain; D019564:Unnecessary Procedures; D055815:Young Adult