The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression

Hereditary angioedema (HAE) is a rare, autosomal dominant disorder characterized by recurrent acute attacks of swelling of the larynx, abdomen, and periphery. This study was designed to assess the humanistic burden of illness associated with HAE. HAE burden was assessed via a web-based survey of pat...

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Bibliographic Details
Published in:Allergy and asthma proceedings Vol. 31; no. 5; pp. 407 - 414
Main Authors: Lumry, William R., Castaldo, Anthony J., Vernon, Margaret K., Blaustein, Marc B., Wilson, David A., Horn, Patrick T.
Format: Journal Article
Language:English
Published: United States OceanSide Publications, Inc 01.09.2010
OceanSide Publications
Subjects:
Abdomen
Activity Impairment
Adult
Angioedema
Angioedemas, Hereditary - psychology
Burden Of Illness
Careers
Chronic Burden
Cost of Illness
Data processing
Depression
Depression - epidemiology
Economics
Emotions
Female
Health Status
Health Surveys
Health-Related Quality Of Life
Hereditary Angioedema
Hereditary diseases
Humans
Inventories
Larynx
Male
Mental depression
Mental disorders
Mental Health
Middle Aged
Pain
Polls & surveys
Productivity
Psychiatric Status Rating Scales
Quality of Life
Side Effects
Treatment
Workers
ISSN:1088-5412, 1539-6304, 1539-6304
Online Access:Get full text
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Summary:Hereditary angioedema (HAE) is a rare, autosomal dominant disorder characterized by recurrent acute attacks of swelling of the larynx, abdomen, and periphery. This study was designed to assess the humanistic burden of illness associated with HAE. HAE burden was assessed via a web-based survey of patients that solicited information on attack characterization, treatment, side effects, pain, and functional and emotional burden of disease management. In addition to HAE-specific sections, the survey used three standardized instruments to compare HAE patient data to normative (healthy) and chronic disease populations: the 12-Item Short Form (SF-12) Health Survey, the Work Productivity and Activity Impairment-General Health (WPAI-GH) questionnaire, and the Hamilton Depression Inventory-Short Form (HDI-SF). A total of 457 HAE patients responded to the survey (response rate, ∼19%). Patients reported significantly poorer health-related quality of life versus population norms, based on the SF-12 Physical Component Summary (mean, 43.7 versus 49.6; p < 0.001) and Mental Component Summary (mean, 42.6 versus 49.4; p < 0.001). HAE patients also had higher mean HDI-SF scores than population norms (8.1 ± 6.5 versus 3.1 ± 3.0; p < 0.001), with 42.5% of HAE patients scoring >8.5, indicative of depressive symptomatology. Productivity was also markedly impaired in all WPAI-GH categories, including 34% overall work impairment. Because of their most recent HAE attack, workers lost a mean of 3.3 days; students lost a mean of 1.9 days. HAE results in considerable humanistic burden to patients across physical and mental health domains; negatively impacts education, career, and work productivity; and compounds the substantial economic burdens that are reported separately.
Bibliography:1088-5412(20100901)31:5L.407;1-
(RF) Otorhinolaryngology
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ISSN:1088-5412
1539-6304
1539-6304
DOI:10.2500/aap.2010.31.3394