瑞士海绵状静脉畸形患者的生活质量。

Quality of Life in Swiss Patients With Spongiform Venous Malformations.

机构信息

Vascular Center, Cantonal Hospital Baden, Baden, Switzerland.

Clinic for Angiology, University Hospital Zurich and University Zurich, Zurich, Switzerland.

出版信息

In Vivo. 2021 Nov-Dec;35(6):3527-3535. doi: 10.21873/invivo.12655.

DOI:10.21873/invivo.12655

PMID:34697191

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8627708/

Abstract

BACKGROUND/AIM: Spongiform venous malformations (sVMs) get symptomatic in >90% of cases during a person's lifetime. Misdiagnosis is still common and treatment often incomplete, making this disease a lifelong issue for patients with a relevant impact on their quality of life.

PATIENTS AND METHODS

Medical records and imaging studies of patients with VMs from April 2002 to January 2017 were reviewed for confirmation of diagnosis and classification of the VMs. Only sVMs were included. Subjective data were obtained from the survey related to indication, response, and complications. We analyzed the frequency of correct diagnosis and Quality of Life by an SF12-based questionnaire for sVM-related issues in Swiss patients.

RESULTS

A total of 80 patients were included in the study. Forty-six (58%) patients were females. Patients were 11.6-77 years old with a median age of 28.1 years. The correct diagnosis according to the ISSVA-classification after having been seen at our Institution was 87%. Thirty-one (39%) patients responded to the survey. Sixteen (51%) were female. Twenty-eight (90%) patients felt that their sVM-related state of health improved within a year. Twelve (39%) patients reported that they could not work as good as normal because of slight to modest impairment by the sVM, while 19 (61%) patients were unimpaired. Mental impairment was found in 8 (26%) patients, while 23 (74%) patients felt no impairment. Eight (26%) patients reported that they were impaired within social contacts due to their sVM. Only 9 (29%) patients reported that venous malformation was diagnosed around birth. Twenty-three (74%) patients received a wrong diagnosis. Patients that were treated, reported close to complete relief of symptoms in 26% (8 patients) while also 26% (8 patients) reported no change of symptoms after therapy.

CONCLUSION

Swiss sVM patients also suffer from misdiagnosis and late diagnosis. They are impacted in their daily life by their disease.

摘要

背景/目的：海绵状静脉畸形（sVMs）在一个人的一生中超过 90%的情况下会出现症状。误诊仍然很常见，治疗往往也不彻底，这使得该病成为患者终身存在的问题，并对其生活质量产生重大影响。

患者与方法

对 2002 年 4 月至 2017 年 1 月期间患有 VMs 的患者的病历和影像学研究进行了回顾，以确认诊断并对 VMs 进行分类。仅纳入 sVMs。通过与适应症、反应和并发症相关的调查获得主观数据。我们分析了瑞士患者基于 SF12 的 sVM 相关问题问卷的正确诊断和生活质量的频率。

结果

本研究共纳入 80 例患者。46 例（58%）患者为女性。患者年龄 11.6-77 岁，中位数年龄为 28.1 岁。在我们机构就诊后，根据 ISSVA 分类正确诊断的比例为 87%。31 例（39%）患者对调查做出了回应。16 例（51%）为女性。28 例（90%）患者认为他们的 sVM 相关健康状况在一年内得到了改善。12 例（39%）患者报告称，由于 sVM 造成轻微至中度的功能障碍，他们无法像正常人一样工作，而 19 例（61%）患者没有受到影响。8 例（26%）患者存在精神障碍，而 23 例（74%）患者没有精神障碍。8 例（26%）患者报告称，由于他们的 sVM，他们在社交接触中受到了影响。只有 9 例（29%）患者报告静脉畸形在出生时被诊断出。23 例（74%）患者被误诊。接受治疗的患者报告称，26%（8 例）的症状几乎完全缓解，而 26%（8 例）的患者在治疗后症状没有变化。