Tarantino Samuela, Proietti Checchi Martina, Papetti Laura, Monte Gabriele, Ferilli Michela Ada Noris, Valeriani Massimiliano
Developmental Neurology Unit, Bambino Gesù Children's Hospital, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS), 00165 Rome, Italy.
Systems Medicine Department, Tor Vergata University of Rome, 00133 Rome, Italy.
Children (Basel). 2024 Jan 8;11(1):71. doi: 10.3390/children11010071.
Multiple sclerosis (MS) is a chronic and unpredictable inflammatory disease impacting the central nervous system. The disabling nature of this disease is not limited to only physical symptoms. MS, even at a pediatric age, often includes cognitive impairment, fatigue, and psychological issues, affecting education and social life, causing emotional distress, and reducing quality of life. Despite the paucity of quantitative data in the existing literature, our review demonstrates that the impact of pediatric MS extends beyond the patients themselves, affecting their parents as well. There is evidence suggesting that having a child with MS may be associated with a reduction in the parental quality of life, even in families of MS patients with low or no disability and without clinical relapses. Moreover, an increased risk of parents' mental illness has been described, particularly in mothers, leading to a heightened utilization of mental health services. Research data show that inadequate information about MS may impact parents' anxiety and their sense of competence. Since parents' involvement has been found to also play a role in their child's adherence to treatment, special attention should be paid to parental psychological health. Additional research exploring family adaptation to their children's illness is required.
多发性硬化症（MS）是一种影响中枢神经系统的慢性且不可预测的炎症性疾病。这种疾病的致残性不仅限于身体症状。MS即使在儿童时期，也常常包括认知障碍、疲劳和心理问题，影响教育和社交生活，导致情绪困扰，并降低生活质量。尽管现有文献中的定量数据匮乏，但我们的综述表明，儿童MS的影响不仅限于患者自身，还会影响他们的父母。有证据表明，即使在残疾程度低或无残疾且无临床复发的MS患者家庭中，生育患有MS的孩子也可能会导致父母生活质量下降。此外，已有研究描述了父母患精神疾病的风险增加，尤其是母亲，这导致心理健康服务的利用率提高。研究数据表明，关于MS的信息不足可能会影响父母的焦虑情绪和他们的能力感。由于发现父母的参与在孩子坚持治疗方面也起着作用，因此应特别关注父母的心理健康。还需要进行更多研究，探索家庭如何适应孩子的疾病。
