Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada/The Hospital for Sick Children, Toronto, ON, Canada/Canadian Centre for Health Economics, Toronto, ON, Canada.
Departments of Internal Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
Mult Scler. 2019 Oct;25(12):1661-1672. doi: 10.1177/1352458518796676. Epub 2018 Aug 30.
Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child's self-perception and the health-related quality of life (HRQoL) of the family.
To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS).
In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL) Modules.
Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (interquartile range (IQR)) of 4.1 (2.0-6.0) years after disease onset. The HRQoL of parents of children with MS and their family functioning was lower when compared to that of parents and families of children with monoADS (both < 0.001); parents of children with MS reported greater emotional dysfunction, worry, worse communication, and lower family functioning irrespective of clinical disease activity. Self-reports of the MS and monoADS participants did not suggest a difference in overall HRQoL or fatigue after adjusting for age of the child at the time of assessment.
While children with MS did not self-report lower HRQoL compared to children who experienced monoADS, the diagnosis of MS during childhood was negatively associated with parental HRQoL and family functioning.
儿童多发性硬化症（MS）的诊断可能会影响患儿的自我认知以及其家庭的健康相关生活质量（HRQoL）。
评估慢性疾病对多发性硬化症患儿及其家庭的影响，与单相获得性脱髓鞘综合征（monoADS）患儿及其家庭进行对比。
在一项全国性的儿科获得性脱髓鞘综合征（ADS）前瞻性队列研究中，使用儿童生活质量量表（PedsQL）模块评估儿童及其家庭的 HRQoL。
参与者（58 例 MS；178 例 monoADS）在疾病发病后中位数（四分位距（IQR））4.1（2.0-6.0）年时提供了横断面 HRQoL 数据。与 monoADS 患儿的父母和家庭相比，MS 患儿的父母 HRQoL 和家庭功能较低（均<0.001）；MS 患儿的父母报告了更多的情绪障碍、担忧、沟通更差和家庭功能更低，无论其临床疾病活动如何。在调整评估时患儿的年龄后，MS 和 monoADS 参与者的自我报告均未提示总体 HRQoL 或疲劳方面存在差异。
尽管 MS 患儿的 HRQoL 自我报告并不比经历过 monoADS 的患儿低，但儿童时期的 MS 诊断与父母 HRQoL 和家庭功能呈负相关。
