青少年癫痫、脑瘫患者与人群的生活质量比较。
Quality of life in adolescents with epilepsy, cerebral palsy, and population norms.
机构信息
Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
出版信息
Dev Med Child Neurol. 2020 May;62(5):609-614. doi: 10.1111/dmcn.14450. Epub 2020 Jan 3.
AIM
To compare: (1) self- and proxy-reported quality of life (QoL) in adolescents with epilepsy, cerebral palsy (CP), both epilepsy and CP, and a representative general population sample; and (2) parental stress between parents of adolescents with epilepsy, CP, or both epilepsy and CP.
METHOD
This was a cross-sectional observational study with 496 adolescents with epilepsy, 699 with CP, 192 with both CP and epilepsy, and 15 396 from the general population, assessed with the KIDSCREEN-52 and Parenting Stress Index (PSI).
RESULTS
All KIDSCREEN-52 domains showed statistically significant differences across groups. The epilepsy population showed clinically better scores for 'school environment' than the general population (Cohen's d=0.62). Parents scored adolescents with CP lower than adolescents with epilepsy or general populations on 'physical health' (d=0.57, d=0.55) and 'social-support and peers' (d=0.82, d=0.91). Parents of adolescents with CP scored them lower than parents of the epilepsy group on 'autonomy' (d=0.62). Parents of adolescents with epilepsy scored them lower on 'mood and emotions' (d=0.52) and 'social acceptance' (d=0.66) than the general population. PSI scores were better for parents of adolescents with CP than for parents of adolescents with epilepsy (d=2.12, d=2.70, d=3.35, d=1.67).
INTERPRETATION
Adolescents with epilepsy or CP self-report equal or better QoL than the general adolescent population, which should comfort families and allow clinicians to address parental concerns.
WHAT THIS PAPER ADDS
Adolescents with epilepsy, with or without cerebral palsy (CP), self-reported better school environment than adolescents in the general population. Proxy quality of life (QoL) results showed clinically important differences across groups in 6 out of 10 domains of the KIDSCREEN-52. Proxy-reported results showed poorer QoL scores for adolescents with epilepsy or CP than the general population. Parental stress level was lower in parents of children with CP or both CP and epilepsy, than in those with only epilepsy.
目的
比较（1）青少年癫痫、脑瘫（CP）、癫痫合并 CP 患者的自我报告和代理报告的生活质量（QoL），以及（2）癫痫、CP 或癫痫合并 CP 青少年患者父母的父母压力。
方法
这是一项横断面观察性研究，纳入了 496 名癫痫青少年、699 名 CP 青少年、192 名癫痫合并 CP 青少年和 15396 名普通人群青少年，采用 KIDSCREEN-52 和父母压力指数（PSI）进行评估。
结果
KIDSCREEN-52 所有领域的得分在组间均存在统计学差异。癫痫患者的“学校环境”评分较普通人群临床得分更高（Cohen's d=0.62）。CP 患者的父母在“身体健康”（d=0.57，d=0.55）和“社会支持和同伴”（d=0.82，d=0.91）方面对 CP 患者的评分低于癫痫患者或普通人群。CP 患者的父母对 CP 患者的“自主”评分低于癫痫患者的父母（d=0.62）。癫痫患者的父母在“情绪和情感”（d=0.52）和“社会接纳”（d=0.66）方面对 CP 患者的评分低于普通人群。CP 患者的父母压力得分优于癫痫患者的父母（d=2.12，d=2.70，d=3.35，d=1.67）。
结论
癫痫或 CP 青少年患者自我报告的生活质量与普通青少年人群相当或更好，这应能使患者家庭感到安慰，并让临床医生能够解决家长的担忧。
本研究新增内容
患有癫痫或 CP 的青少年患者自我报告的学校环境比普通人群中的青少年更好。KIDSCREEN-52 中有 10 个领域中的 6 个领域，代理报告的生活质量结果显示组间存在临床重要差异。代理报告的结果显示，癫痫或 CP 青少年患者的生活质量评分比普通人群更差。CP 患者或癫痫合并 CP 患者的父母的压力水平低于仅有癫痫的患者的父母。
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