Hämäläinen Päivi, Viitala Matias, Kuusisto Hanna, Ruutiainen Juhani, Soilu-Hänninen Merja
From the Department of Psychology and Speech-Language Pathology, University of Turku, Turku, Finland.
The Finnish Neuro Society, Masku, Finland.
Int J MS Care. 2024 Oct 7;26(Q4):273-280. doi: 10.7224/1537-2073.2023-082. eCollection 2024 Oct.
Patient-generated data are a cornerstone of individualized multiple sclerosis (MS) treatment. MyMS, an interface for patient-reported outcomes (PROs) was developed by the Finnish MS Register to enable systematic collection of PROs.
MyMS collects data on demographics, lifestyle factors, disease-related factors, and validated questionnaires, including the Quality of Life Questionnaire (15D), the Multiple Sclerosis Impact Scale (MSIS-29), and the Fatigue Severity Scale (FSS). At the end of 2020, the patient-reported Expanded Disability Status Scale (PREDSS), the EuroQOL-5 Dimension (EQ-5D), the Fatigue Scale for Motor and Cognitive Functions (FSMC), and the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ) were added.
As of January 1, 2023, 1201 individuals with MS (79% female) have added data to MyMS. Of the validated PRO measures (PROMs), the 15D, MSIS-29, and FSS are the most used. The mean PREDSS score is 3.0 and median disease duration is 6.4 years. According to the existing PROMs, patients report mildly compromised quality of life and problems with fatigue and cognition.
The patient interface of the Finnish MS Register consists of data from 17 of 21 counties with well-being services. The interface is used by 10% of Finnish individuals with MS. The addition of the PREDSS, EQ-5D, FSMC, and MSNQ to the interface has increased health care professional and patient interest in the use of PROMs. We suggest that PROs should be integrated into electronic health records to improve shared decision-making and diminish documentation burden.
患者生成的数据是个体化多发性硬化症（MS）治疗的基石。芬兰MS登记处开发了MyMS这一患者报告结局（PRO）界面，以实现PRO的系统收集。
MyMS收集人口统计学、生活方式因素、疾病相关因素以及经过验证的问卷数据，包括生活质量问卷（15D）、多发性硬化症影响量表（MSIS - 29）和疲劳严重程度量表（FSS）。在2020年底，增加了患者报告的扩展残疾状态量表（PREDSS）、欧洲五维健康量表（EQ - 5D）、运动和认知功能疲劳量表（FSMC）以及多发性硬化症神经心理学问卷（MSNQ）。
截至2023年1月1日，1201名MS患者（79%为女性）已向MyMS添加数据。在经过验证的PRO测量指标（PROMs）中，15D、MSIS - 29和FSS是使用最多的。PREDSS平均得分为3.0，疾病中位持续时间为6.4年。根据现有的PROMs，患者报告生活质量轻度受损，存在疲劳和认知问题。
芬兰MS登记处的患者界面包含来自21个设有福利服务的县中的17个县的数据。该界面被10%的芬兰MS患者使用。在界面中添加PREDSS、EQ - 5D、FSMC和MSNQ增加了医疗保健专业人员和患者对使用PROMs的兴趣。我们建议应将PRO整合到电子健康记录中，以改善共同决策并减轻记录负担。
