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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.
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.
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