King's College London & Moorfields Eye Hospital NHS Foundation Trust, London, UK.
University of London, London, UK.
Trials. 2023 Jan 28;24(1):66. doi: 10.1186/s13063-022-07021-1.
For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient 'experience' reflects a key measure of quality in health care (Department of Health. High Quality Care for All: NHS Next Stage Review Final Report: The Stationery Office (2008)); research participant 'experiences' are equally important. Therefore, in order to achieve child-centred, high-quality paediatric ophthalmic research, we need to understand participation experiences. We conducted a systematic review of existing literature; our primary outcome was to understand what children and young people, parents and research staff perceive to support or hinder positive paediatric eye and vision research experiences. Our secondary outcomes explored whether any adverse or positive effects were perceived to be related to participation experiences, and if any interventions to improve paediatric ophthalmic research experiences had previously been developed or used.
We searched (from inception to November 2018, updated July 2020) in MEDLINE, Embase, CINAHL, Web of Science, NICE evidence and The Cochrane Library (CDSR and CENTRAL), key journals (by hand), grey literature databases and Google Scholar; looking for evidence from the perspectives of children, young people, parents and staff with experience of paediatric ophthalmic research. The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) (National Institute for Health Research. Research Participant Experience Survey Report 2018-19 (2019); National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) identified 'five domains' pivotal to shaping positive research experiences; we used these domains as an 'a priori' framework to conduct a 'best fit' synthesis (Carroll et al., BMC Med Res Methodol. 11:29, 2011; Carroll et al., BMC Med Res Methodol. 13:37, 2013).
Our search yielded 13,020 papers; two studies were eligible. These evaluated research experiences from the perspectives of parents and staff; the perspectives of children and young people themselves were not collected. No studies were identified addressing our secondary objectives. Synthesis confirmed the experiences of parents were shaped by staff characteristics, information provision, trial organisation and personal motivations, concurring with the 'PRES domains' (National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) and generating additional dimensions to participation motivations and the physical and emotional costs of study organisation.
The evidence base is limited and importantly omits the voices of children and young people. Further research, involving children and young people, is necessary to better understand the research experiences of this population, and so inform quality improvements for paediatric ophthalmic research care and outcomes.
Review registered with PROSPERO, International prospective register of systematic reviews: CRD42018117984. Registered on 11 December 2018.
对于有眼部和视力问题的儿童和青少年来说，研究对于推进基于证据的诊断、预防、治疗和治愈建议至关重要。患者“体验”反映了医疗保健质量的关键衡量标准（卫生部。全民优质护理：NHS 下一阶段审查最终报告：文具办公室（2008 年））；研究参与者的“体验”同样重要。因此，为了实现以儿童为中心的高质量儿科眼科研究，我们需要了解参与体验。我们对现有文献进行了系统回顾；我们的主要结果是了解儿童、青少年、家长和研究人员认为哪些因素可以支持或阻碍积极的儿科眼部和视力研究体验。我们的次要结果探讨了是否有任何不良或积极的影响被认为与参与体验有关，以及之前是否开发或使用过任何改善儿科眼科研究体验的干预措施。
我们从 MEDLINE、Embase、CINAHL、Web of Science、NICE 证据和 Cochrane 图书馆（CDSR 和 CENTRAL）、主要期刊（手工检索）、灰色文献数据库和 Google Scholar 中进行了搜索（从成立到 2018 年 11 月，2020 年 7 月更新），寻找有儿科眼科研究经验的儿童、青少年、家长和工作人员的观点的证据。英国国民健康保险制度（National Institute for Health Research，NIHR）研究参与者体验调查（PRES）（National Institute for Health Research. Research Participant Experience Survey Report 2018-19（2019 年）；National Institute for Health Research. Optimising the Participant in Research Experience Checklist（2019 年））确定了塑造积极研究体验的“五个领域”；我们使用这些领域作为一个“先验”框架来进行“最佳拟合”综合分析（Carroll 等人，BMC Med Res Methodol. 11:29，2011 年；Carroll 等人，BMC Med Res Methodol. 13:37，2013 年）。
我们的搜索结果为 13020 篇论文；有两项研究符合条件。这些研究从家长和工作人员的角度评估了研究经验；没有收集到儿童和青少年自己的观点。没有发现任何针对我们次要目标的研究。综合分析证实，家长的体验受到工作人员特征、信息提供、试验组织和个人动机的影响，与“PRES 领域”（英国国民健康保险制度。优化研究参与者体验清单（2019 年））一致，并产生了参与动机和研究组织的身体和情感成本的附加维度。
证据基础有限，重要的是忽略了儿童和青少年的声音。需要进一步研究，让儿童和青少年参与其中，以更好地了解这一人群的研究体验，从而为儿科眼科研究护理和结果的质量改进提供信息。
在 PROSPERO 上注册，国际前瞻性系统评价注册：CRD42018117984。于 2018 年 12 月 11 日注册。
