Transforming early Education and Child Health Research Centre (TeEACH), Western Sydney University, Westmead, New South Wales, Australia
Academic Department of Adolescent Medicine, The Children's Hospital at Westmead Clinical School, Westmead, New South Wales, Australia.
BMJ Open. 2024 Aug 3;14(8):e080149. doi: 10.1136/bmjopen-2023-080149.
The Westmead Centre for Adolescent and Young Adult Health is a purpose-built facility supporting integrated care for young patients with a variety of long-term health conditions transitioning from paediatric services at the Children's Hospital at Westmead to adult services at Westmead Hospital, Australia.
This protocol outlines a prospective, within-subjects, repeated-measures longitudinal cohort study to measure self-reported experiences and outcomes of patients (12-25 years) and carers accessing transition care at the Centre for Adolescent and Young Adult Health. Longitudinal self-report data will be collected using Research Electronic Data Capture surveys at the date of service entry (recruitment baseline), with follow-ups occurring at 6 months, 12 months, 18 months and after transfer to adult services. Surveys include validated demographic, general health and psychosocial questionnaires. Participant survey responses will be linked to routinely recorded data from hospital medical records. Hospital medical records data will be extracted for the 12 months prior to service entry up to 18 months post service entry. All young people accessing services at the Centre for Adolescent and Young Adult Health that meet inclusion criteria will be invited to join the study with research processes to be embedded into routine practices at the site. We expect a sample of approximately 225 patients with a minimum sample of 65 paired responses required to examine pre-post changes in patient distress. Data analysis will include standard descriptive statistics and paired-sample tests. Regression models and Kaplan-Meier method for time-to-event outcomes will be used to analyse data once sample size and test requirements are satisfied.
The study has ethics approval through the Sydney Children's Hospitals Network Human Research Ethics Committee (2021/ETH11125) and site-specific approvals from the Western Sydney Local Health District (2021/STE03184) and the Sydney Children's Hospitals Network (2039/STE00977). Patients under the age of 18 will require parental/carer consent to participate in the study. Patients over 18 years can provide informed consent for their participation in the research. Dissemination of research will occur through publication of peer-reviewed journal reports and conference presentations using aggregated data that precludes the identification of individuals. Through this work, we hope to develop a digital common that can be shared with other researchers and clinicians wanting to develop a standardised and shared approach to the measurement of patient outcomes and experiences in transition care.
韦斯特米德青少年和青年健康中心是一个专门为患有各种长期健康状况的年轻患者提供综合护理而建立的设施，这些患者正在从韦斯特米德儿童医院的儿科服务过渡到澳大利亚韦斯特米德医院的成人服务。
本方案概述了一项前瞻性、受试者内、重复测量的纵向队列研究，旨在测量在青少年和青年健康中心接受过渡护理的患者（12-25 岁）及其照顾者的自我报告体验和结果。纵向自我报告数据将使用 Research Electronic Data Capture 调查在服务进入日期（招募基线）收集，随访时间为 6 个月、12 个月、18 个月和转移到成人服务后。调查包括经过验证的人口统计学、一般健康和心理社会问卷。参与者的调查答复将与从医院病历中记录的常规数据相关联。将从服务进入前的 12 个月到服务进入后 18 个月提取医院病历数据。所有符合纳入标准并在青少年和青年健康中心接受服务的年轻人都将被邀请参加研究，研究过程将嵌入到该地点的常规实践中。我们预计大约有 225 名患者参与研究，需要至少 65 对配对应答来检查患者痛苦的前后变化，以确保样本量和测试要求得到满足。数据分析将包括标准描述性统计和配对样本检验。一旦满足样本量和测试要求，将使用回归模型和 Kaplan-Meier 方法进行时间到事件结果的分析。
该研究已通过悉尼儿童医院网络人类研究伦理委员会（2021/ETH11125）获得伦理批准，并获得西悉尼地方卫生区（2021/STE03184）和悉尼儿童医院网络（2039/STE00977）的特定站点批准。18 岁以下的患者需要父母/照顾者同意才能参与研究。18 岁以上的患者可以自行同意参与研究。研究结果将通过发表同行评议的期刊报告和会议演讲进行传播，使用的是汇总数据，不会识别个人。通过这项工作，我们希望开发一个数字公共平台，可以与其他研究人员和临床医生共享，以开发过渡护理中患者结果和体验测量的标准化和共享方法。
