Tacke Moritz, Hannibal Iris, Vill Katharina, Bonfert Michaela V, Müller-Felber Wolfgang, Blaschek Astrid
Department of Pediatrics, Division of Pediatric Neurology, MUC iSPZ Hauner-Munich University Center for Children with Medical and Developmental Complexity, Dr. von Hauner Children's Hospital, LMU University Hospital, 80337 Munich, Germany.
Children (Basel). 2024 Aug 21;11(8):1024. doi: 10.3390/children11081024.
Most studies on the progression of childhood-onset multiple sclerosis (MS) involve relatively short follow-up periods, focusing primarily on neurological outcomes and disability progression. The influence of these and other factors on the health-related quality of life is not known. To gain a comprehensive understanding of early-onset MS, it is crucial to evaluate the effects of treatment and the disease on quality of life.
This pilot project aimed to evaluate the feasibility of using an online survey tool for long-term follow-up data collection from patients with childhood-onset MS. An anonymized, monocentric, prospective survey was conducted on a convenience cohort of patients treated at a certified centre for neuromuscular diseases in childhood between 2007 and 2019.
A total of 27 patients completed the survey. There were no mandatory items, therefore some patients chose not to answer all the questions in the questionnaire. Patients exhibited promising educational achievements, low neurological disease burden, and high resilience. However, anxiety, depression, and pain significantly impacted their perceived health status.
This single-centre study has yielded new insights into childhood-onset MS. To enable more accurate comparisons across different centres and countries, it is essential to establish a minimum data set and questionnaire subset for patients with paediatric-onset MS transitioning into adulthood.
大多数关于儿童期多发性硬化症（MS）病情进展的研究随访期相对较短，主要关注神经学结果和残疾进展情况。这些因素及其他因素对健康相关生活质量的影响尚不清楚。为全面了解早发性MS，评估治疗和疾病对生活质量的影响至关重要。
本试点项目旨在评估使用在线调查工具从儿童期MS患者收集长期随访数据的可行性。对2007年至2019年期间在一家认证的儿童神经肌肉疾病中心接受治疗的便利样本队列患者进行了匿名、单中心、前瞻性调查。
共有27名患者完成了调查。由于没有必填项目，因此一些患者选择不回答问卷中的所有问题。患者展现出良好的教育成就、较低的神经疾病负担和较高的恢复力。然而，焦虑、抑郁和疼痛显著影响了他们的自我健康状况。
这项单中心研究为儿童期MS带来了新的见解。为了在不同中心和国家之间进行更准确的比较，为从儿童期过渡到成年期的MS患者建立最小数据集和问卷子集至关重要。
