Faculty of General Medicine, Department of Neurology, Albert Szent-Györgyi Clinical Centre, University of Szeged, Szeged, Hungary.
Department of Neurology, Bajcsy-Zsilinszky Hospital, Budapest, Hungary.
PLoS One. 2022 Mar 3;17(3):e0264328. doi: 10.1371/journal.pone.0264328. eCollection 2022.
Because of the past 3 decades' extensive research, several disease modifying therapies became available, thus a paradigm change is multiple sclerosis care was necessary. In 2018 a therapeutic guideline was created recommending that treatment of persons with multiple sclerosis should take place in specified care units where the entire spectrum of disease modifying therapies is available, patient monitoring is ensured, and therapy side effects are detected and treated promptly. In 2019 multiple sclerosis care unit criteria were developed, emphasizing personnel and instrumental requirements to provide most professional care. However, no survey was conducted assessing the real-world adaptation of these criteria.
To assess whether Hungarian care units fulfil international criteria.
A self-report questionnaire was assembled based on international guidelines and sent to Hungarian care units focusing on 3 main aspects: personnel and instrumental background, disease-modifying therapy use, number of people living with multiple sclerosis receiving care in care units. Data on number of persons with multiple sclerosis were compared to Hungarian prevalence estimates. Descriptive statistics were used to analyse data.
Out of 27 respondent care units, 3 fulfilled minimum requirements and 7 fulfilled minimum and recommended requirements. The least prevalent neighbouring specialties were spasticity and pain specialist, and neuro-ophthalmologist and oto-neurologist. Only 15 centres used all available disease modifying therapies. A total number of 7213 people with multiple sclerosis received care in 27 respondent centres. Compared to prevalence estimates, 2500 persons with multiple sclerosis did not receive multiple sclerosis specific care in Hungary.
Less than half of Hungarian care units provided sufficient care for people living with multiple sclerosis. Care units employing fewer neighbouring specialties, might have difficulties diagnosing and providing appropriate care for persons with multiple sclerosis, especially for people with progressive disease course, contributing to the reported low number of persons living with multiple sclerosis.
由于过去 30 年的广泛研究,出现了几种疾病修正疗法,因此多发性硬化症的治疗模式发生了变化。2018 年制定了治疗指南,建议多发性硬化症患者的治疗应在指定的护理单位进行,在这些单位中可以获得整个疾病修正疗法的范围,确保对患者进行监测,并及时发现和治疗治疗副作用。2019 年制定了多发性硬化症护理单位标准,强调了提供最专业护理所需的人员和仪器要求。然而,没有进行调查来评估这些标准在现实世界中的适应性。
评估匈牙利的护理单位是否符合国际标准。
根据国际指南,我们编制了一份自我报告问卷,并将其发送给匈牙利的护理单位,重点关注 3 个主要方面:人员和仪器背景、疾病修正疗法的使用、在护理单位接受护理的多发性硬化症患者人数。将多发性硬化症患者人数的数据与匈牙利的流行率估计进行比较。使用描述性统计分析数据。
在 27 个回答问卷的护理单位中,有 3 个单位满足最低要求,有 7 个单位满足最低要求和推荐要求。最不常见的相邻专业是痉挛和疼痛专家、神经眼科医生和耳神经科医生。只有 15 个中心使用了所有可用的疾病修正疗法。在 27 个回答问卷的中心,共有 7213 名多发性硬化症患者接受了护理。与流行率估计相比,匈牙利有 2500 名多发性硬化症患者没有接受多发性硬化症的专业护理。
匈牙利不到一半的护理单位为多发性硬化症患者提供了足够的护理。雇用较少相邻专业的护理单位可能在诊断和为多发性硬化症患者提供适当护理方面存在困难,特别是对进展性疾病患者,这导致报告的多发性硬化症患者人数较低。