Ibitoye Bukola Mary, Garrett Bernie, Ranger Manon, Stinson Jennifer
School of Nursing, University of British Columbia, Vancouver, BC, Canada.
Department of Nursing Science, Faculty of Clinical Sciences, University of Ilorin, Ilorin, Kwara, Nigeria.
Patient. 2023 Jan;16(1):19-29. doi: 10.1007/s40271-022-00592-w. Epub 2022 Jul 22.
Patient-oriented research involves extensive collaboration with patients, their families, caregivers, clinicians and other relevant stakeholders to identify and investigate problems and outcomes relevant to patients. Patient-oriented research can help develop effective patient-centred interventions. Patient-oriented research is an increasingly used approach in high-income countries, but it is unclear how patients are engaged in research in low-income and middle-income countries (LMICs).
The aim of this scoping review was to explore how patient-oriented research is conducted in LMICs. The objectives were to determine the levels of involvement of patients in the research, how studies have impacted healthcare and patient outcomes in these countries, the reported benefits of patient-oriented research on the research process and the reported challenges of conducting patient-oriented research in LMICs.
A scoping review was conducted using the methodological framework suggested by Arksey and O'Malley and the Joanna Briggs Institute guidelines for conducting scoping reviews. The eligibility criteria were any healthcare research using any research design that involved patients of any age group in the research process. Six databases were searched from their inception till January 4, 2022: MEDLINE, Embase, Cumulated Index to Nursing and Allied Health Literature, PsychInfo, Cochrane Central Register of Controlled Trials and EBM Reviews. The reference lists of relevant articles and Google Scholar were combed as well. Data extraction was performed with a self-developed data extraction guide. The findings were narratively summarised.
Thirteen articles were included in this scoping review, representing eight LMICs in Africa and Asia. The majority of studies (38%, n = 5) focused on patients living with human immunodeficiency virus. More than half of the studies (n = 8, 62%) were conducted in the adult population, 31% (n = 4) of the studies involved children and/or adolescents. For most of the studies (92%, n = 12), the participants served as consultants; for one study, the authors identified the participants as co-researchers. Across the studies, information regarding patient-oriented research activities was not consistently reported in the same manner (i.e. different locations in the article), with very limited information in some cases. None of the studies used a patient-oriented research framework and the majority did not report on how patient-oriented research impacted healthcare and patient outcomes. Patient-oriented research was beneficial in identifying relevant patients' needs and improving collaboration among stakeholders, but it also led to extended research timelines and increased financial costs for the researchers and patients.
Researchers in LMICs are incorporating patient-oriented research in their research; however, there is a need for improved reporting practices in published articles, and the use of frameworks to guide patient-oriented research in LMICs. In LMICs, patient-oriented research enhances collaboration across stakeholders and gives patients a sense of ownership over the interventions and research process. Future work should focus on developing contextually relevant conceptual frameworks and further studies should explore the impact of patient-oriented research on healthcare and patient outcomes in the LMIC context.
以患者为导向的研究涉及与患者、其家人、护理人员、临床医生及其他相关利益相关者广泛合作，以识别和研究与患者相关的问题及结果。以患者为导向的研究有助于开发有效的以患者为中心的干预措施。在高收入国家，以患者为导向的研究是一种越来越常用的方法，但目前尚不清楚低收入和中等收入国家（LMICs）的患者如何参与研究。
本范围综述的目的是探讨在LMICs中如何开展以患者为导向的研究。目标是确定患者在研究中的参与程度、这些国家的研究如何影响医疗保健和患者结局、所报告的以患者为导向的研究对研究过程的益处以及在LMICs开展以患者为导向的研究所报告的挑战。
使用Arksey和O'Malley建议的方法框架以及乔安娜·布里格斯研究所开展范围综述的指南进行范围综述。纳入标准为任何使用任何研究设计且在研究过程中涉及任何年龄组患者的医疗保健研究。检索了六个数据库，从其创建至2022年1月4日：医学索引数据库（MEDLINE）、荷兰医学文摘数据库（Embase）、护理学与健康相关文献累积索引、心理学文摘数据库（PsychInfo）、考克兰对照试验中心注册库和循证医学综述。还梳理了相关文章的参考文献列表和谷歌学术。使用自行开发的数据提取指南进行数据提取。对研究结果进行了叙述性总结。
本范围综述纳入了13篇文章，代表了非洲和亚洲的8个LMICs。大多数研究（38%，n = 5）关注感染人类免疫缺陷病毒的患者。超过一半的研究（n = 8，62%）针对成年人群体开展，31%（n = 4）的研究涉及儿童和/或青少年。对于大多数研究（92%，n = 12），参与者担任顾问；一项研究中，作者将参与者确定为共同研究者。在所有研究中，关于以患者为导向的研究活动的信息并非以一致的方式报告（即文章中的不同位置），在某些情况下信息非常有限。没有一项研究使用以患者为导向的研究框架，大多数研究也未报告以患者为导向的研究如何影响医疗保健和患者结局。以患者为导向的研究有助于确定患者的相关需求并改善利益相关者之间的合作，但也导致研究时间延长，研究人员和患者的财务成本增加。
LMICs的研究人员正在将以患者为导向的研究纳入其研究中；然而，已发表文章的报告做法需要改进，并且需要使用框架来指导LMICs中的以患者为导向的研究。在LMICs中，以患者为导向的研究加强了利益相关者之间的合作，并使患者对干预措施和研究过程有主人翁意识。未来的工作应侧重于开发与背景相关的概念框架，进一步的研究应探讨在LMICs背景下以患者为导向的研究对医疗保健和患者结局的影响。
