Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, Ontario, Canada.
Offord Centre for Child Studies, McMaster University, Hamilton, Ontario, Canada.
BMJ Open. 2024 Apr 29;14(4):e083045. doi: 10.1136/bmjopen-2023-083045.
The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the (. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning.
We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school.
Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.
自闭症具有发育变化的特点，这给提供量身定制的及时服务带来了挑战，以满足儿童的需求。尽管最近关注纵向研究，但利益相关者的优先事项设定举措强调了研究儿童日常功能和健康的社会决定因素的重要性，以为临床护理提供信息。为了解决这个问题，我们正在进行一项实用的多地点、以患者为中心的纵向研究：（1）从诊断到入学过渡的时间范围内，研究新诊断为自闭症的幼儿（<7 岁）的适应功能轨迹的变异性；（2）确定与适应功能轨迹相关的因素。
我们的目标是从七个地点招募 1300 名年龄在 7 岁以下、最近（在 12 个月内）被诊断为自闭症的儿童：六个在加拿大；一个在以色列。参与者将从诊断开始前瞻性地随访到 8 岁，每 6 个月评估一次。父母/照顾者将通过定制的在线研究门户完成问卷。在每次评估时间点之后，家庭将收到一份研究总结报告，描述他们孩子在适应功能和相关领域的进展。对纵向数据的分析将绘制轨迹，并检查与同质性（个体间和个体内随时间的异质性）相关的儿童、家庭和服务特征，以及与过渡到学校等敏感时期相关的可能轨迹转折点。
所有地点都已获得伦理批准。所有父母/受访者在注册研究时都将提供知情同意。通过一种综合的知识转化方法，直接让利益相关者参与研究过程，将确定与自闭症儿童功能轨迹相关的因素。由此产生的证据将与政府政策制定者共享，以告知省级和国家计划。研究结果将在会议上公布，并在同行评议的期刊上发表。
