Department of rehabilitation, Rehabilitation Centre Heliomare, Wijk aan Zee, North Holland The Netherlands.
Department of Urology, Erasmus MC, Rotterdam, South Holland, The Netherlands.
PLoS One. 2024 Oct 21;19(10):e0310691. doi: 10.1371/journal.pone.0310691. eCollection 2024.
Nerve damage and/or spinal cord injury in individuals with multiple sclerosis (MS) may result in the development of bladder and bowel problems. We wanted to gain insight into two issues: the prevalence of bladder and bowel problems among individuals with MS and the referral pathways for these problems to various physicians treating patients with MS.
In the autumn of 2021, we undertook a nationwide cross-sectional study. We used a comprehensive questionnaire comprising 63 questions covering aspects such as MS diagnosis, disease progression, bladder and bowel issues, and consultations with healthcare professionals. Individuals with MS were invited to participate through social media or by direct mail.
The study included 1,082 validated respondents (81.5% female) with an average age of 53.3 years at participation, and an average age of 38.3 years at MS-diagnosis. Among the respondents, 91% experienced bladder problems while 73% indicated they had bowel problems. Within these respective groups, 42% and 47% were not aware of the connection between these issues and MS. Bladder and bowel related complaints disrupted daily life for 45% and 28% of the respondents, respectively. The patients consulted various healthcare providers for their complaints. Most respondents expressed dissatisfaction with the time it took to resolve their problems and 9% of those with bladder complaints and 60% of those with bowel complaints had not yet found a satisfactory solution.
In the Netherlands, bladder and bowel symptoms in individuals with MS are highly prevalent and have a considerable impact on quality of life. Lack of awareness of these symptoms frequently leads to inadequate recognition, both by the patient and healthcare professional. Patients often consult various healthcare professionals for these complaints, which can potentially result in suboptimal treatment due to a lack of specialized expertise.
多发性硬化症（MS）患者的神经损伤和/或脊髓损伤可能导致膀胱和肠道问题的发生。我们希望深入了解两个问题：MS 患者中膀胱和肠道问题的流行情况，以及这些问题向治疗 MS 患者的各种医生转诊的途径。
在 2021 年秋季，我们进行了一项全国性的横断面研究。我们使用了一份包含 63 个问题的综合问卷，涵盖了 MS 诊断、疾病进展、膀胱和肠道问题以及与医疗保健专业人员的咨询等方面。通过社交媒体或直接邮件邀请 MS 患者参与研究。
该研究纳入了 1082 名经验证的应答者（81.5%为女性），他们在参与研究时的平均年龄为 53.3 岁，MS 诊断时的平均年龄为 38.3 岁。在应答者中，91%经历过膀胱问题，73%表示他们有肠道问题。在这些相应的组中，42%和 47%的人不知道这些问题与 MS 之间的联系。膀胱和肠道相关的抱怨分别影响了 45%和 28%的应答者的日常生活。患者因这些抱怨咨询了各种医疗保健提供者。大多数应答者对解决问题所需的时间表示不满，9%有膀胱问题的应答者和 60%有肠道问题的应答者尚未找到满意的解决方案。
在荷兰，MS 患者的膀胱和肠道症状非常普遍，对生活质量有很大影响。这些症状的认识不足，无论是患者还是医疗保健专业人员都经常无法识别。患者经常因这些抱怨咨询各种医疗保健专业人员，由于缺乏专业知识，这可能导致治疗效果不佳。
