Rosa Laura, Petracca Maria, Carotenuto Antonio, Dolce Pasquale, Piscopo Kyrie, Dicé Francesca, Lauro Francesca, Spiezia Antonio Luca, Moccia Marcello, Lavorgna Luigi, Iacovazzo Carmine, Servillo Giuseppe, Maldonato Nelson Mauro, Chiodi Alessandro, Brescia Morra Vincenzo, Lanzillo Roberta
Department of Public Health, University of Naples Federico II, 80131 Naples, Italy.
Department of Neurosciences and Reproductive and Odontostomatological Sciences, University of Naples Federico II, 80131 Naples, Italy.
J Clin Med. 2022 Sep 4;11(17):5226. doi: 10.3390/jcm11175226.
This study investigates longitudinal changes in health-related quality of life (HRQoL) in early-onset multiple sclerosis (MS) patients and explores the impact of disease activity (relapses) on such changes. People with MS (PwMS) onset between 12 and 25 years of age were followed longitudinally. At baseline and at year 4, patients were asked to fill the Paediatric Quality of life inventory (PedsQL). Demographic and clinical features were collected at both time points. Longitudinal within-group comparison of HRQoL total score and sub-scores was performed via paired samples t-test. The effect of relapses on the HRQoL changes over time was explored via linear mixed-effects analysis. No longitudinal changes were observed in the overall PedsQL score, nor in the physical, school and psychological functioning. An increase in the social functioning subscale (p < 0.001) and a decrease in the emotional subscale (p = 0.006) were observed. The change in social functioning, but not the one in the emotional subscale, was affected by the occurrence of relapses (p = 0.044). In conclusion, stimulating the patients to accept their emotional responses to health-related limitations, while preserving their social and relational resources seems key to the preservation of an adequate QoL over time in juvenile-onset MS.
本研究调查早发性多发性硬化症（MS）患者健康相关生活质量（HRQoL）的纵向变化，并探讨疾病活动（复发）对此类变化的影响。对12至25岁发病的多发性硬化症患者（PwMS）进行纵向随访。在基线和第4年时，要求患者填写儿童生活质量量表（PedsQL）。在两个时间点收集人口统计学和临床特征。通过配对样本t检验对HRQoL总分和子分数进行纵向组内比较。通过线性混合效应分析探讨复发对HRQoL随时间变化的影响。未观察到PedsQL总分、身体、学校和心理功能方面的纵向变化。观察到社会功能子量表得分增加（p < 0.001），情感子量表得分下降（p = 0.006）。复发的发生影响了社会功能的变化，但未影响情感子量表的变化（p = 0.044）。总之，刺激患者接受其对健康相关限制的情绪反应，同时保留其社会和关系资源，似乎是在青少年期MS中随时间保持适当生活质量的关键。
