Department of Pediatrics, University of British Columbia, Faculty of Medicine, Vancouver, British Columbia, Canada.
School of Physical and Occupational Therapy, McGill University, Faculty of Medicine and Health Sciences, Montreal, Quebec, Canada.
Dev Med Child Neurol. 2021 Jun;63(6):668-674. doi: 10.1111/dmcn.14810. Epub 2021 Jan 22.
To evaluate patient engagement processes in the development of a new health coaching intervention for parents of children with suspected developmental delays.
A cross-sectional mixed-method study design was used. Researchers (n=18) and patient-partners (n=9) were surveyed using the Public and Patient Engagement Evaluation Tool (PPEET) in areas of: (1) communication/supports for participation; (2) sharing views/perspectives; (3) impacts/influence of engagement initiative; and (4) final thoughts/satisfaction. Descriptive statistics and an inductive thematic-based approach were used to analyse the data.
For both study groups, high agreement, with responses largely ranging between 'agree' to 'strongly agree', was noted on all four sections of the PPEET. Qualitative reports reflected that patient engagement was important, meaningful, and had a significant impact on the quality of the project and on the professional development of researchers in their understanding and use of patient-oriented methodology. Patient-partners noted challenges related to having realistic deadlines in providing feedback and a lack of a broader range of representation among members.
The benefits and challenges of applying patient-oriented strategies to a multicentre trial were highlighted. These will be used to enhance our engagement processes.
评估在为疑似发育迟缓儿童的家长开发新健康指导干预措施的过程中患者参与的情况。
采用了横断面混合方法研究设计。研究人员（n=18）和患者伙伴（n=9）使用公众和患者参与评估工具（PPEET）在以下方面进行了调查：（1）参与的沟通/支持；（2）观点/看法的分享；（3）参与计划的影响/影响；（4）最终的想法/满意度。使用描述性统计和基于归纳的主题方法对数据进行了分析。
对于两个研究组，在 PPEET 的所有四个部分，高同意率，回答大多介于“同意”到“强烈同意”之间。定性报告反映，患者参与非常重要、有意义，对项目质量和研究人员在理解和使用以患者为中心的方法方面的专业发展产生了重大影响。患者伙伴指出，在提供反馈方面存在现实的截止日期方面的挑战，以及成员之间缺乏更广泛的代表性。
强调了将以患者为中心的策略应用于多中心试验的好处和挑战。这些将用于加强我们的参与过程。
