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.
Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
Ann Allergy Asthma Immunol. 2021 Apr;126(4):394-400.e3. doi: 10.1016/j.anai.2021.01.002. Epub 2021 Jan 13.
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.
遗传性血管性水肿 (HAE) 与生活质量 (QoL) 下降有关，通常使用非疾病特异性的通用问卷来衡量。
我们旨在使用先前验证的 HAE 特异性问卷评估加拿大 I 型和 II 型 HAE 患者的 QoL。
向两个加拿大 HAE 患者团体的成员发送在线问卷，以收集人口统计学、HAE 临床病程和 QoL 评分的数据。所有 18 岁或以上的 I 型或 II 型 HAE 患者均符合条件。评估了可用临床因素对 QoL 评分的影响。使用临床相关因素进行多元线性回归，以预测 HAE QoL 结果。
在研究的 72 名患者中，HAE 总体 QoL 评分平均为 102（±23）（SD），范围为 25 至 135，得分越高表示 QoL 越好。尽管总体 QoL 评分与患者的满意度和感知控制呈正相关（两者均<0.001），但与急性发作次数呈负相关（P=0.03）。然而，治疗类型对 QoL 没有影响。预测因子，包括性别、合并症和发作次数，仅解释了总 QoL 评分变异的 12%。
尽管接受了推荐的治疗，但 HAE 仍会继续损害加拿大患者的 QoL。尽管发作频率会影响 QoL，但患者对 HAE 护理的体验也会对 QoL 产生重大影响。该研究强调了医生制定适当管理计划时，应考虑患者对 HAE 护理的体验的重要性。
