Quality of life in patients with hereditary angioedema in Canada

Erika Yue Lee1, Jane Hsieh2, Rozita Borici-Mazi3

  • 1Faculty 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.

Insights

Hereditary angioedema (HAE) significantly impacts quality of life (QoL) in Canadian patients. Patient satisfaction and perceived control improve QoL, while attack frequency negatively affects it.

Area of Science:

  • Immunology
  • Genetics
  • Patient-Reported Outcomes

Background:

  • Hereditary angioedema (HAE) is linked to reduced quality of life (QoL).
  • QoL in HAE patients has historically been assessed using generic, non-disease-specific tools.

Purpose of the Study:

  • To evaluate QoL in Canadian patients with HAE types I and II.
  • To utilize a validated, HAE-specific questionnaire for QoL assessment.

Main Methods:

  • An online survey was distributed to Canadian HAE patient groups.
  • Data collected included demographics, clinical course, and QoL scores from 72 eligible HAE patients.
  • Multiple linear regression analyzed factors influencing QoL outcomes.

Main Results:

  • The mean total HAE QoL score was 102 (±23), indicating moderate QoL.
  • Higher QoL correlated with patient satisfaction and perceived control (P < .001).
  • Increased acute attacks negatively correlated with QoL (P = .03), while treatment type showed no impact.

Conclusions:

  • HAE negatively affects QoL in Canadian patients, even with treatment.
  • Patient experience with HAE care significantly influences QoL, alongside attack frequency.
  • Incorporating patient experience into management plans is crucial for improving HAE QoL.
Abstract

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