■对于患有神经肌肉疾病(NMD)的女性在家中以外的其他地方上厕所所面临的挑战知之甚少;这个话题对于参与和膀胱健康非常重要。
■目的是调查拥有NMD的女性不在家时是否上厕所有问题,问题对他们社会活动的影响,教育,和工作生活,他们使用哪些策略来解决问题,和下尿路症状(LUTS)的患病率。
■一项全国性调查,其中包含有关NMD类型的问题,移动性,对社会活动的影响,教育,工作生活,膀胱健康是由NMD女性和研究人员开发的。通过国际尿失禁问卷调查女性下尿路症状模块(ICIQ-FLUTS)评估LUTS。邀请了在丹麦国家神经肌肉疾病康复中心注册的≥12岁(n=1617)的女性患者。
■692名妇女(43%)接受了邀请;21%的人不走动。25%的受访者不在家时避免上厕所。三分之一的受访者认为上厕所的问题影响了他们的社交生活。43%的受访者不喝酒以避免不在家时排尿,61%的人排尿频率低,17%的人经历过尿路感染,35%的人经历过尿失禁。很少与专业人士讨论问题,只有5%的参与者接受了神经泌尿学评估.
结果突出了NMD女性不在家时小便的困难,以及这些困难如何影响功能,参与,和膀胱健康。该研究表明,对神经泌尿科诊所的问题缺乏认识。有必要在临床实践中解决这一问题,以提供支持性治疗和解决方案,使NMD妇女能够参与。252\\关键字\\KWDtitle关键字神经肌肉疾病\\9月妇女健康\\9月厕所设施\\9月尿路感染\\9月参与\\9月康复\\结束冲突。
UNASSIGNED: Little is known about the challenges faced by women with a neuromuscular disease (NMD) when having to go to the toilet in other places than home; a topic that is highly important for participation and bladder health.
UNASSIGNED: The aim was to investigate whether women with NMD have problems in going to the toilet when not at home, the problems\' impact on their social activities, education, and working life, which strategies they use to manage the problems, and the prevalence of lower urinary tract symptoms (LUTS).
UNASSIGNED: A national survey containing questions on type of NMD, mobility, impacts on social activities, education, working life, and bladder health was developed by women with NMD and researchers. LUTS were assessed by the International Consultation on Incontinence Questionnaire Female Lower Urinary Tract Symptoms Modules (ICIQ-FLUTS). Female patients≥12 years (n = 1617) registered at the Danish National Rehabilitation Centre for Neuromuscular Diseases were invited.
UNASSIGNED: 692 women (43% ) accepted the invitation; 21% were non-ambulant. 25% of respondents avoided going to the toilet when not at home. One third of respondents experienced that problems in going to the toilet impacted their social life. 43% of respondents refrained from drinking to avoid voiding when not at home, 61% had a low frequency of urinating, 17% had experienced urinary tract infections, and 35% had experienced urine incontinence. Problems were seldom discussed with professionals, only 5% of participants had been referred to neuro-urological evaluation.
UNASSIGNED: The results highlight the difficulties in urinating faced by women with NMD when not at home and how these difficulties impact functioning, participation, and bladder health. The
study illustrates a lack of awareness of the problems in the neuro-urological clinic. It is necessary to address this in clinical practice to provide supportive treatment and solutions that will enable participation for women with NMD.∥\\keywords \\KWDtitle KeywordsNeuromuscular diseases\\sep women\'s health\\sep toilet facilities\\sep urinary tract infection\\sep participation\\sep rehabilitation \\end contstartabstract.