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Fostering research pathways to positive long‐term outcomes for childhood‐onset epilepsy
Developmental Medicine & Child Neurology ( IF 3.8 ) Pub Date : 2020-03-07 , DOI: 10.1111/dmcn.14514
Kathy Nixon Speechley 1, 2
Affiliation  

The long-term prognosis for seizure control in children with epilepsy is relatively good, yet many children with epilepsy continue to experience deficits that compromise their quality of life (QoL) into adolescence and adulthood. The QoL achieved appears to be the product of a complex interplay of factors, that extends beyond epilepsyspecific aspects, such as seizure characteristics. The article by Kesselmayer et al. reports that while young adults with uncomplicated childhood-onset epilepsy demonstrated comparable long-term psychosocial status (educational attainment, living arrangement, employment status, personal income, marital status, QoL) compared to controls (first-degree cousins), functional outcomes (limitations in cognition and overall disability) were poorer in the epilepsy sample, independent of seizure control. They also report results corroborating previous evidence that baseline comorbidities, such as attention-deficit/hyperactivity disorder and poor academic achievement, are risk factors for long-term functional deficits. This research highlights the need to: (1) develop a better understanding of patient-reported outcomes in adulthood associated with childhoodonset epilepsy and (2) identify the key risk factors that affect outcome trajectories. Filling these knowledge gaps is essential to fuel the process of developing and evaluating interventions that will be appropriately timed and targeted to those most likely to benefit. Kesselemayer et al. show some of the key methodological attributes to guide this important line of research: (1) prospectively following children with newly-diagnosed epilepsy over a decade, (2) choice of control group based on strong rationale to limit bias, and (3) baseline measurement of prevalent comorbidities (e.g. psychiatric disorders consistent with DSM-IV criteria via structured interview). Limitations related to sample size and the period of follow-up must be overcome in subsequent studies, as the authors state. Adequately powered studies evaluating the complex interplay of multiple factors are necessary to identify true risk factors for key long-term outcomes, including those that occur beyond the early phase of transition into adulthood. Other key methodological advances are also warranted in the effort to foster pathways to positive long-term outcomes in childhood-onset epilepsy. Building on Kesselmayer et al.’s findings which highlight the pervasive impact that neurobehavioral comorbidities can have on long-term outcomes, additional baseline factors should be investigated as potential risk or protective factors for outcome trajectories. If observable early indicators near the time of epilepsy diagnosis explain some observed variability in future life outcomes achieved, these baseline characteristics could be used to screen patients for early interventions. For example, capturing key aspects of family environment, such as family functioning, stressors, extended social support, and parents’ mental health using patient reported outcome measures (PROMs), offers a valuable social context from which to elucidate potential malleable targets for family-centered interventions to complement early clinical management. It is possible that such strategies could improve key ‘intermediate’ child and family outcomes found to moderate or mediate the impact that childhoodonset epilepsy has on QoL.

中文翻译:

促进儿童发作性癫痫长期积极结果的研究途径

癫痫儿童癫痫发作控制的长期预后相对较好,但许多癫痫儿童在青春期和成年期仍会出现影响其生活质量 (QoL) 的缺陷。实现的 QoL 似乎是复杂因素相互作用的产物,超出了癫痫特定方面,例如癫痫发作特征。Kesselmayer 等人的文章。报告指出,虽然与对照组(一级表亲)相比,患有无并发症的儿童期癫痫症的年轻人表现出相当的长期心理社会状态(教育程度、生活安排、就业状况、个人收入、婚姻状况、QoL),但功能结果(限制认知和整体残疾)在癫痫样本中较差,与癫痫控制无关。他们还报告的结果证实了先前的证据,即基线合并症,如注意力缺陷/多动障碍和学业成绩不佳,是长期功能缺陷的危险因素。本研究强调需要:(1) 更好地了解患者报告的与儿童期癫痫相关的成年期结果,以及 (2) 确定影响结果轨迹的关键风险因素。填补这些知识空白对于推动制定和评估干预措施的过程至关重要,这些干预措施将适时地针对最有可能受益的人群。Kesselemayer 等人。展示指导这一重要研究方向的一些关键方法论属性:(1) 前瞻性跟踪新诊断的癫痫儿童超过十年,(2) 基于限制偏倚的强有力的理由选择对照组,以及 (3) 普遍合并症的基线测量(例如,通过结构化访谈符合 DSM-IV 标准的精神疾病)。正如作者所说,在后续研究中必须克服与样本量和随访时间相关的限制。评估多种因素复杂相互作用的充分有力的研究对于确定关键长期结果的真正风险因素是必要的,包括那些发生在过渡到成年早期阶段之后的风险因素。在努力促进儿童期癫痫的积极长期结果的途径方面,还需要其他关键的方法学进步。建立在 Kesselmayer 等人的基础上。的研究结果强调了神经行为合并症可能对长期结果产生的普遍影响,应调查其他基线因素作为结果轨迹的潜在风险或保护因素。如果在癫痫诊断时间附近可观察到的早期指标解释了所观察到的未来生活结果的一些变异性,则这些基线特征可用于筛查患者进行早期干预。例如,使用患者报告的结果测量 (PROM) 捕捉家庭环境的关键方面,例如家庭功能、压力源、扩展的社会支持和父母的心理健康,提供了一个有价值的社会背景,从中可以阐明家庭的潜在可延展目标——以补充早期临床管理为中心的干预措施。
更新日期:2020-03-07
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