Trajectory research in children with an autism diagnosis: A scoping review

Stephen J Gentles, Elise C Ng-Cordell, Michelle C Hunsche，et al.

Researchers increasingly employ longitudinal trajectory methods to understand developmental pathways of people on the autism spectrum across the lifespan. By assessing developmental or health-related outcome domains at three or more timepoints, trajectory studies can characterize their shape and varying rates of change over time. The purpose of this scoping review was to identify and summarize the published breadth of research that uses a trajectory study design to examine development in children (to age 18 years) diagnosed with autism. Using a systematic search and

screening procedure, 103 studies were included. This review summarizes methodological characteristics across studies including the varying statistical approaches used. A series of figures maps where published research is available across

10 outcome domains and the ages over which children have been followed. Evidence gaps, informed by the perspectives of the autistic and caregiver stakeholders that were engaged in this review, are discussed. We recommend that future trajectory research addresses the absence of studies from low- and middle-income countries, considers longitudinal assessment of outcome domains that caregivers and autistic people consider meaningful, and plans follow-up periods with assessment timepoints that cover the gaps in ages where more outcome-specific data are needed.

Lay Abstract

The types of outcomes studied in children on the autism spectrum include clinical characteristics, such as social functioning, communication, language, or autism symptoms. Research that measures these outcomes at multiple timepoints is useful

to improve our understanding of what to expect as children develop. In trajectory studies, researchers assess outcomes at three or more timepoints. This method has advantages over two-timepoint studies because it allows researchers to describe changes in the speed of development, such as accelerations, plateaus, or slowdowns. We identified and reviewed 103 published trajectory studies in children (to age 18 years) with an autism diagnosis. Importantly, we did not include studies of treatments or their effects, nor did we summarize the results of studies. Instead, this review summarizes the characteristics of the available published research, including the methods used, the many different outcomes that have been studied over time and the ages over which they have been studied. This summary may be of interest to autistic people and caregivers (parents) who want to know about the existence of research that provides answers about what to expect during an autistic child’s development. We have recommended that future trajectory research efforts try to make up for the lack of studies from low- and middle-income countries; that more attention is given to the following outcomes that are meaningful to caregivers and autistic people; and to try to fill in the age gaps where more outcome-specific data are needed.

摘要  研究人员越来越多地使用纵向轨迹方法来了解自闭症患者一生中的发展路径。通过评估三个或三个以上时间点的发育或健康相关结果领域，轨迹研究可以表征它们的形状和随时间变化的变化速度。这一范围审查的目的是确定和总结已发表的使用轨迹研究设计来检查被诊断为自闭症的儿童(至18岁)的发展的研究广度。使用系统的搜索和筛选程序，纳入103项研究。这篇综述总结了不同研究的方法学特点，包括使用的不同统计方法。一系列图表描绘了在10个结果领域发表的研究成果以及儿童被跟踪的年龄。证据差距，由自闭症患者和照顾者利益相关者的观点，参与了这一审查，进行了讨论。我们建议，未来的轨迹研究应解决低收入和中等收入国家缺乏研究的问题，考虑对照顾者和自闭症患者认为有意义的结果领域进行纵向评估，并计划具有评估时间点的后续阶段，以弥补需要更多特定结果数据的年龄差距。

自闭症谱系中研究的儿童结果的类型包括临床特征，如社交功能、沟通、语言或自闭症症状。在多个时间点衡量这些结果的研究有助于我们更好地理解儿童发育过程中会发生什么。在轨迹研究中，研究人员在三个或更多的时间点评估结果。这种方法比两个时间点的研究更有优势，因为它允许研究人员描述开发速度的变化，如加速、停滞或减速。我们确定并回顾了103项已发表的关于自闭症儿童(至18岁)的轨迹研究。重要的是，我们没有包括对治疗或其影响的研究，也没有总结研究的结果。相反，这篇综述总结了现有已发表研究的特点，包括所使用的方法，随着时间的推移已经研究的许多不同的结果，以及它们被研究的年代。这一总结可能会引起自闭症患者和照顾者(父母)的兴趣，他们想知道是否有研究为自闭症儿童的发展提供了答案。我们建议，未来的轨迹研究努力努力弥补低收入和中等收入国家研究的不足；更多地关注以下对照顾者和自闭症患者有意义的结果；并努力填补需要更多具体结果数据的年龄差距。