@article {Lumry:2010:1088-5412:407,
title = "The humanistic burden of hereditary angioedema: Impact on health-related quality of life, productivity, and depression",
journal = "Allergy and Asthma Proceedings",
parent_itemid = "infobike://ocean/aap",
publishercode ="ocean",
year = "2010",
volume = "31",
number = "5",
publication date ="2010-09-01T00:00:00",
pages = "407-414",
itemtype = "ARTICLE",
issn = "1088-5412",
eissn = "1539-6304",
url = "https://www.ingentaconnect.com/content/ocean/aap/2010/00000031/00000005/art00013",
doi = "doi:10.2500/aap.2010.31.3394",
keyword = "chronic burden, productivity, health-related quality of life, side effects, depression, burden of illness, treatment, Activity impairment, mental health, hereditary angioedema, pain",
author = "Lumry, William R. and Castaldo, Anthony J. and Vernon, Margaret K. and Blaustein, Marc B. and Wilson, David A. and Horn, Patrick T.",
abstract = "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 ImpairmentGeneral Health (WPAI-GH) questionnaire, and the Hamilton Depression InventoryShort 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 p p 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.",
}