中枢神经系统未治疗海绵状血管畸形患者的健康相关生活质量。

Health-related quality of life in patients with untreated cavernous malformations of the central nervous system.

机构信息

Department of Neurosurgery, University Hospital Essen, Essen, Germany.

Institute for Medical Informatics, Biometry and Epidemiology, University Hospital of Essen, Essen, Germany.

出版信息

Eur J Neurol. 2021 Feb;28(2):491-499. doi: 10.1111/ene.14546. Epub 2020 Oct 24.

DOI:10.1111/ene.14546

PMID:32961598

Abstract

BACKGROUND AND PURPOSE

To estimate health-related quality of life (HRQOL) in patients with untreated cavernous malformation of the CNS [cavernous cerebral malformations (CCMs)].

METHODS

We performed a cross-sectional observational study on patients with CCMs admitted to our department from 1 November 2017 to 10 January 2020 using standardized interviews [short-form-36 questionnaire, hospital anxiety and depression score (HADS-A/D), CCM perception questionnaire]. Included criteria were diagnosis of an untreated CCM and information about the diagnosis in a specialized CCM consultation. Health-related quality of life (HRQOL) data were analyzed and compared to the German normal population. Uni- and multivariate analyses were carried out to identify variables with impact on outcome.

RESULTS

Two hundred nineteen (93%) of 229 eligible patients were included. Mean age was 46.3 ± 14.7 (18-86) years; 136 (62%) were female. Ninety-eight (45%) patients presented with symptomatic hemorrhage (SH), and 17 (8%) with repetitive SH. Ninety-two (42%) patients were asymptomatic. Thirty-seven patients (17%) suffered from cavernoma-related epilepsy. Twenty-eight patients (13%) suffered from familial CCMs. Patients showed significantly decreased component scores and subdomain scores compared to the normal population, with effects ranging from small to large. This accounted largely also for asymptomatic patients (except for physical component score and main physical subdomains). Multivariate regression analysis confirmed impact of functional impairment on physical component score. HADS-A was significantly increased. HADS-A/D strongly correlated with mental component score and individual perception of the CCM.

CONCLUSIONS

Patients with the diagnosis of a CCM showed decreased HRQOL compared to the normal population even when not suffering functional impairment or neurological symptoms. Our data may function as benchmarks in evaluation of different (future) management strategies.

摘要

背景与目的

评估未经治疗的中枢神经系统海绵状血管畸形（海绵状脑畸形，CCM）患者的健康相关生活质量（HRQOL）。

方法

我们对 2017 年 11 月 1 日至 2020 年 1 月 10 日期间在我科就诊的 CCM 患者进行了横断面观察性研究，采用标准化访谈（简短 36 问卷、医院焦虑和抑郁量表（HADS-A/D）、CCM 感知问卷）。纳入标准为诊断为未经治疗的 CCM 并在专门的 CCM 咨询中提供诊断信息。分析健康相关生活质量（HRQOL）数据，并与德国正常人群进行比较。进行单变量和多变量分析，以确定对结果有影响的变量。

结果

229 例符合条件的患者中，219 例（93%）纳入研究。平均年龄为 46.3±14.7（18-86）岁；136 例（62%）为女性。98 例（45%）患者有症状性出血（SH），17 例（8%）患者有复发性 SH。92 例（42%）患者无症状。37 例（17%）患者患有海绵状血管畸形相关性癫痫。28 例（13%）患者患有家族性 CCM。患者的各分量表评分和子域评分均明显低于正常人群，影响范围从小到大为。这在很大程度上也适用于无症状患者（除了身体成分评分和主要身体子域）。多变量回归分析证实了功能障碍对身体成分评分的影响。HADS-A 显著升高。HADS-A/D 与心理成分评分和患者对 CCM 的个体感知密切相关。