Military Hospital- Medical Centre, Hungarian Defense Forces, Budapest, Hungary.
Semmelweis University-Doctoral School of Mental Health Sciences, Budapest, Hungary.
PLoS One. 2022 Dec 1;17(12):e0277543. doi: 10.1371/journal.pone.0277543. eCollection 2022.
Quality of life (QoL) is a concept that includes physical, psychological, social, spiritual, and other domains of functioning. Good QoL is a fundamental goal of treatment for Cerebral Palsy (CP), therefore it is an outstanding goal of Conductive Education (CE) as well. CE is a Hungarian method that combines special education and rehabilitation for people living with CP.
We aimed to compare the opinions and views about the life of teenagers from the perspective of adolescents and their caregivers from different socio-cultural backgrounds.
It was a descriptive, cross-sectional study. We used the Cerebral Palsy Quality of Life for the adolescent questionnaire (CP QoL -Teen) to measure QoL, which was translated into Hungarian and validated by Semmelweis University in 2017. Our study included 20 young adolescents (mean age 16) with CP and their caregivers living in Hungary (n1 = 40) and 20 Hungarian-speaking families (n2 = 40) from surrounding countries: Slovakia, Romania, and Ukraine (mean age 14.5). All the families are participating in CE.
There was no significant divergence in the whole QoL score between the groups. Nonetheless, we found an outstanding difference in the Hungarian groups' 'Feelings about functioning' domain between teens and caregivers. A significant proportion of Hungarian teens-although living with greater pain-are less concerned about their illness (R = -0.754). 85% of responders study at segregated schools offering CE.
The study shed new light on the importance of a personalized form of education and on the weight of the positive effects of segregated education. Personalized education can develop the patients' QoL.
生活质量（QoL）是一个包含身体、心理、社会、精神和其他功能领域的概念。良好的生活质量是脑瘫（CP）治疗的一个基本目标，因此也是导体教育（CE）的一个突出目标。CE 是一种结合了特殊教育和康复的匈牙利方法，适用于 CP 患者。
我们旨在比较来自不同社会文化背景的青少年及其照顾者对青少年生活的看法和意见。
这是一项描述性的、横断面研究。我们使用了脑瘫青少年生活质量问卷（CP QoL - Teen）来衡量生活质量，该问卷于 2017 年被翻译成匈牙利语，并由塞梅维什大学验证。我们的研究包括 20 名患有 CP 的青少年（平均年龄 16 岁）及其照顾者，他们居住在匈牙利（n1 = 40）和 20 个来自周边国家（斯洛伐克、罗马尼亚和乌克兰）讲匈牙利语的家庭（n2 = 40），这些家庭都参加了 CE。
整个 QoL 评分在两组之间没有显著差异。然而，我们在匈牙利组青少年和照顾者之间的“对功能的感觉”领域发现了显著的差异。尽管匈牙利青少年生活在更大的痛苦中，但他们对自己的疾病并不那么担忧，这一比例相当高（R = -0.754）。85%的应答者在提供 CE 的隔离学校学习。
这项研究揭示了个性化教育形式的重要性，以及隔离教育的积极影响的重要性。个性化教育可以提高患者的生活质量。
