遗传性痉挛性截瘫的遗传和散发性患者的尿症状、生活质量和患者满意度。
Urinary symptoms, quality of life, and patient satisfaction in genetic and sporadic hereditary spastic paraplegia.
机构信息
Department of Neurology, Christian-Albrechts-University Kiel, Kiel, Germany.
Department of Neurology, Ludwig-Maximilians-University München, Feodor-Lynen-Straße 19, 81377, Munich, Germany.
出版信息
J Neurol. 2019 Jan;266(1):207-211. doi: 10.1007/s00415-018-9129-8. Epub 2018 Nov 22.
BACKGROUND
Urinary involvement is common in hereditary spastic paraplegias (HSPs), but has rarely been assessed systematically.
METHODS
We characterized urinary complaints in 71 German HSP patients (mean age 55.4 ± 13.9 years; mean disease duration 20.7 ± 14.3 years; 48% SPG4-positive) using validated clinical rating scales (SCOPA-AUT, ICIQ-SF, ICIQ-LUTSqol). Treatment history and satisfaction with medical care was also assessed.
RESULTS
74.6% of patients had one or more urological problems, most commonly nocturia and urgency. Incontinence was more severe in women, correlating with SCOPA-AUT. Female gender and SPG4 mutations were associated with higher urinary frequency and severity of urological involvement. QoL was overall reduced, more in women and in SPG4 mutation carriers. Almost 90% consulted a medical specialist; more than half were largely satisfied. 43.4% received oral medication and 5.7% received intravesical botulinum toxin. However, more than one-third of patients remained untreated.
CONCLUSION
Urinary complaints are common in HSP and should be addressed and treated.
背景
遗传性痉挛性截瘫（HSP）常伴有尿路受累，但鲜有系统评估。
方法
我们采用经验证的临床评分量表（SCOPA-AUT、ICIQ-SF、ICIQ-LUTSqol）对 71 名德国 HSP 患者（平均年龄 55.4 ± 13.9 岁；平均病程 20.7 ± 14.3 年；48% SPG4 阳性）的尿路症状进行了评估。同时还评估了患者的治疗史和对医疗服务的满意度。
结果
74.6%的患者存在一种或多种泌尿系统问题，最常见的是夜尿和尿急。女性患者的尿失禁更为严重，与 SCOPA-AUT 评分相关。女性和 SPG4 突变与更高的尿路频率和更严重的泌尿系统受累相关。总体而言，生活质量降低，女性和 SPG4 突变携带者更为明显。近 90%的患者咨询了医学专家；超过一半的患者非常满意。43.4%的患者接受了口服药物治疗，5.7%的患者接受了膀胱内肉毒杆菌毒素治疗。然而，仍有超过三分之一的患者未得到治疗。
结论
HSP 患者常伴有尿路症状，应予以关注和治疗。
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