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Health-related quality of life in relation to disease activity in adults with hereditary angioedema in Sweden

Nordenfelt, Patrik (author)
Linköpings universitet,Institutionen för klinisk och experimentell medicin,Medicinska fakulteten,Department of Internal Medicine, County Hospital Ryhov, Jönköping, Sweden
Nilsson, Mats (author)
Futurum, Academy for Health and Care, Jönköping County Council, Jönköping, Sweden
Lindfors, Anders (author)
Karolinska Institutet,Department of Pediatrics, Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden
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Wahlgren, Carl-Fredrik (author)
Karolinska Institutet,Dermatology Unit, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden / Department of Dermatology, Karolinska University Hospital, Stockholm, Sweden
Björkander, Jan Fredrik, 1946- (author)
Linköpings universitet,Avdelningen för neuro- och inflammationsvetenskap,Medicinska fakulteten,Futurum, Academy for Health and Care, Jönköping County Council, Jönköping, Sweden,
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 (creator_code:org_t)
OceanSide Publications, 2017
2017
English.
In: Allergy and Asthma Proceedings. - : OceanSide Publications. - 1088-5412 .- 1539-6304. ; 38:6, s. 447-455
  • Journal article (peer-reviewed)
Abstract Subject headings
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  • Background: Health-related quality of life (HR-QoL) is impaired in patients with hereditary angioedema (HAE) but has not yet been satisfactorily described.Objective: To study HR-QoL in patients with HAE by combining different HR-QoL instruments with disease activity assessment. Methods: All adults in the Swedish HAE registry were invited to take part in this questionnaire study, which used the generic HR-QoL instruments, EuroQol 5 Dimensions 5 Level (EQ-5D-5L) and the RAND Corporation Short Form 36 (RAND-36), the disease-specific Angioedema Quality of Life instrument (AE-QoL), the recently introduced Angioedema Activity Score (AAS) form, and questionnaires on sick leave and prophylactic medication.Results: Sixty-four of 133 adults (26 men, 38 women) between 18 and 91 years old responded. The most affected HR-QoL dimensions in the EQ-5D-5L were pain/discomfort and anxiety/depression; in the RAND-36, energy/fatigue, general health, pain; and, in the AE-QoL, fears/shame and fatigue/mood. Women had lower HR-QoL in the RAND-36 for general health and energy/fatigue (p < 0.05). Patients who reported any AAS of >0 had significantly impaired HR-QoL. There were significant associations (p < 0.05) between the AAS and EQ-5D-5L, between the AAS and all dimensions of the RAND-36 except physical function, and between the AAS and AE-QoL in all dimensions. Nine of 36 patients who reported sick leave during the previous 4 weeks had significantly impaired HR-QoL in all the instruments (p < 0.05). There was no significant difference in HR-QoL in the patients with and the patients without prophylactic medication, except for the nutrition dimension of the AE-QoL (p < 0.05).Conclusion: Comprehensive information is obtained by combining different HR-QoL instruments. Pain, anxiety/depression, and fatigue/mood are important aspects of HAE but the AE-QoL disregards pain. HR-QoL was not significantly affected by prophylaxis. Increased disease activity was associated with impaired HR-QoL, which justifies more active disease management.

Subject headings

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Neurologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Neurology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Geriatrik (hsv//swe)
MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Geriatrics (hsv//eng)

Keyword

AAS; AE-QoL; C1-inhibitor deficiency; EQ-5D-5L; HAE; HR-QoL; RAND-36; Sweden; disease activity; prophylaxis; sex differences; sick leave; the Svensson method

Publication and Content Type

ref (subject category)
art (subject category)

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