The aim of this study was to reveal the long-term health-related quality of life (HRQOL), educational level, and impact on occupation in 55 patients who experienced ruptured brain arteriovenous malformations (AVMs) that were treated during childhood.

In 2016, questionnaires including the 15D instrument were sent to all living patients older than 18 years (n = 432) in the Helsinki AVM database. The cohort was further specified to include only patients with ruptured AVMs who were younger than 20 years at the time of diagnosis (n = 55). Educational level was compared with the age-matched general population of Finland. The mean 15D scores were calculated for independent variables (Spetzler-Ponce classification, admission age, symptomatic epilepsy, and multiple bleeding episodes) and tested using the independent-samples t-test or ANCOVA. Linear regression was used to create a multivariate model. Bonferroni correction was used with multiple comparisons.

The mean follow-up time from diagnosis to survey was 24.2 (SD 14.7) years. The difference in the mean 15D scores between Spetzler-Ponce classes did not reach statistical significance. The youngest age group (< 10 years at the time of diagnosis) performed less well on the dimension of usual activities than the older patients. Symptomatic epilepsy significantly reduced the long-term HRQOL. Multiple hemorrhages significantly reduced the scores on three dimensions: mobility, speech, and sexual activity. In the regression model, symptomatic epilepsy was the only significant predictor for a lower 15D score. The educational level of the cohort was for the most part comparable to that of the general population in the same age group. AVM was the reason for early retirement in 11% of the patients, while lowered performance because of the AVM was reported by 37% of the patients.

Patients with ruptured AVMs treated in childhood can live an independent and meaningful life, even in the case of the highest-grade lesions. Symptomatic epilepsy significantly reduced the long-term HRQOL, highlighting the need for continuing support for these patients.

本研究的目的是揭示 55 名在儿童时期接受治疗的破裂性脑动静脉畸形 (AVM) 患者的长期健康相关生活质量 (HRQOL)、教育水平以及对职业的影响。

2016 年，赫尔辛基 AVM 数据库中向所有 18 岁以上在世患者（n = 432）发送了包括 15D 仪器在内的调查问卷。该队列进一步指定仅包括诊断时年龄小于 20 岁的 AVM 破裂患者 (n = 55)。教育水平与芬兰同龄一般人口进行了比较。计算自变量（Spetzler-Ponce 分类、入院年龄、症状性癫痫和多次出血发作）的平均 15D 分数，并使用独立样本 t 检验或 ANCOVA 进行测试。线性回归用于创建多元模型。 Bonferroni 校正用于多重比较。

从诊断到调查的平均随访时间为 24.2 (SD 14.7) 年。 Spetzler-Ponce 班级之间的平均 15D 分数差异未达到统计学显着性。最年轻的年龄组（诊断时<10岁）在日常活动方面的表现不如年长的患者。症状性癫痫显着降低了长期HRQOL。多处出血显着降低了三个维度的得分：活动能力、言语和性活动。在回归模型中，有症状的癫痫是 15D 评分较低的唯一显着预测因素。该群体的教育水平在很大程度上与同一年龄组的一般人群相当。 AVM 是 11% 患者提前退休的原因，而 37% 的患者报告由于 AVM 导致工作表现下降。

即使是最严重的病变，在儿童时期接受治疗的动静脉畸形破裂患者也可以过上独立且有意义的生活。症状性癫痫显着降低了长期 HRQOL，凸显了对这些患者持续支持的必要性。