1. Burden of Illness in Hereditary Angioedema: A Conceptual Model
- Author
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Anette Bygum, Henrik Balle Boysen, Kathleen Beusterien, Emel Aygören-Pürsün, Emily Hautamaki, Teresa Caballero, Suzanne Wait, and Zlatko Sisic
- Subjects
Male ,Health-related quality of life ,Denmark ,Anxiety ,Cost of Illness ,Quality of life ,Germany ,Medicine ,Burden of illness ,Young adult ,Qualitative Research ,media_common ,Hereditary angioedema ,C1-inhibitor deficiency ,Anxiety/etiology ,General Medicine ,Middle Aged ,Caregivers ,Educational Status ,Female ,medicine.symptom ,Worry ,Adult ,Employment ,medicine.medical_specialty ,Adolescent ,media_common.quotation_subject ,MEDLINE ,Angioedemas, Hereditary/psychology ,Dermatology ,Models, Psychological ,Unnecessary Procedures ,Interviews as Topic ,Young Adult ,Caregivers/psychology ,Humans ,Psychiatry ,Aged ,business.industry ,HAE ,Angioedemas, Hereditary ,medicine.disease ,Spain ,Quality of Life ,Conceptual model ,business ,Qualitative research - Abstract
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.
- Published
- 2015
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