Quality of life in patients with hereditary angioedema in Canada.


Journal

Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology
ISSN: 1534-4436
Titre abrégé: Ann Allergy Asthma Immunol
Pays: United States
ID NLM: 9503580

Informations de publication

Date de publication:
04 2021
Historique:
received: 14 10 2020
revised: 06 12 2020
accepted: 04 01 2021
pubmed: 16 1 2021
medline: 20 4 2021
entrez: 15 1 2021
Statut: ppublish

Résumé

Hereditary angioedema (HAE) is associated with decreased quality of life (QoL), which has typically been measured using a generic non-disease-specific questionnaire. We aimed to assess the QoL in patients with HAE type I and II in Canada using a previously validated HAE-specific questionnaire. An online questionnaire was sent to the members of two Canadian HAE patient groups to collect data on demographics, HAE clinical course, and QoL scores. All patients 18 years of age or older with HAE type I or II were eligible. The impact of the available clinical factors on the QoL scores was evaluated. Multiple linear regression was performed using clinically relevant factors to predict HAE QoL outcome. Among the 72 patients in the study, the mean total HAE QoL score was 102 (±23) (SD) on a scale of 25 to 135, with higher scores indicating better QoL. Although the total QoL scores correlated positively with patients' level of satisfaction and perceived control (P < .001 for both), it correlated negatively with the number of acute attacks (P = .03). Yet, the types of treatment did not have an impact on the QoL. Predictors, including sex, comorbidities, and the number of attacks, only explained 12% of the variance in the total QoL scores. HAE continues to impair QoL in Canadian patients despite receiving recommended treatment. Although the frequency of attacks affects QoL, patients' experience with their HAE care also affects QoL substantially. The study highlights the importance of considering patients' experience with their HAE care as physicians develop an appropriate management plan.

Sections du résumé

BACKGROUND
Hereditary angioedema (HAE) is associated with decreased quality of life (QoL), which has typically been measured using a generic non-disease-specific questionnaire.
OBJECTIVE
We aimed to assess the QoL in patients with HAE type I and II in Canada using a previously validated HAE-specific questionnaire.
METHODS
An online questionnaire was sent to the members of two Canadian HAE patient groups to collect data on demographics, HAE clinical course, and QoL scores. All patients 18 years of age or older with HAE type I or II were eligible. The impact of the available clinical factors on the QoL scores was evaluated. Multiple linear regression was performed using clinically relevant factors to predict HAE QoL outcome.
RESULTS
Among the 72 patients in the study, the mean total HAE QoL score was 102 (±23) (SD) on a scale of 25 to 135, with higher scores indicating better QoL. Although the total QoL scores correlated positively with patients' level of satisfaction and perceived control (P < .001 for both), it correlated negatively with the number of acute attacks (P = .03). Yet, the types of treatment did not have an impact on the QoL. Predictors, including sex, comorbidities, and the number of attacks, only explained 12% of the variance in the total QoL scores.
CONCLUSION
HAE continues to impair QoL in Canadian patients despite receiving recommended treatment. Although the frequency of attacks affects QoL, patients' experience with their HAE care also affects QoL substantially. The study highlights the importance of considering patients' experience with their HAE care as physicians develop an appropriate management plan.

Identifiants

pubmed: 33450396
pii: S1081-1206(21)00002-8
doi: 10.1016/j.anai.2021.01.002
pii:
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

394-400.e3

Informations de copyright

Copyright © 2021 American College of Allergy, Asthma & Immunology. Published by Elsevier Inc. All rights reserved.

Auteurs

Erika Yue Lee (EY)

Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; Division of Clinical Immunology and Allergy, Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada. Electronic address: erika.lee@mail.utoronto.ca.

Jane Hsieh (J)

Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.

Rozita Borici-Mazi (R)

Division of Allergy and Immunology, Department of Medicine, Queen's University, Kingston, Ontario, Canada.

Teresa Caballero (T)

Allergy Department, Hospital Universitario La Paz, Hospital La Paz Institute for Health Research (IdiPaz), Biomedical Research Network on Rare Diseases (CIBERER U754), Madrid, Spain.

Amin Kanani (A)

Division of Allergy and Immunology, Department of Medicine, St. Paul's Hospital, University of British Columbia, Vancouver, British Columbia, Canada.

Gina Lacuesta (G)

Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.

Christine McCusker (C)

Division of Pediatric Allergy and Immunology, McGill University Health Centre Research Institute, Montreal, Québec, Canada.

Susan Waserman (S)

Division of Clinical Immunology and Allergy, Department of Medicine, McMaster University, Hamilton, Ontario, Canada.

Stephen Betschel (S)

Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; Division of Clinical Immunology and Allergy, Department of Medicine, St. Michael's Hospital, University of Toronto, Toronto, Ontario, Canada.

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