The impact of a patient advisory board on a clinical comparative effectiveness trial: a comparison of patient and researcher perspectives.

IF 1.9 4区 医学 Q3 HEALTH CARE SCIENCES & SERVICES
Laura M Kernan, Monica Baczko Pearl, Adina Harri, Carol A Lambourne, Robert Schlegel, C McCollister Evarts, Mary Beth Crummer, Conrad Persels, Nancy Mullen, Vincent D Pellegrini
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引用次数: 0

Abstract

Aim: To examine contributions of a patient advisory board (PAB) to the design and conduct of The Pulmonary Embolism Prevention after Hip and Knee Replacement (PEPPER) Trial (NCT02810704) and compare perceptions of PAB members and researchers on the Trial. Materials & methods This evaluation of the PAB was conducted by Clinical Coordinating Center (CCC) members who first discussed PAB contributions, leading to the design of a semi-structured WebEx interview individually querying PAB members on their experience. Two study team members analyzed transcriptions of the interviews for common themes, which were discussed and affirmed at an in-person meeting with PAB members. Results: The contribution most frequently cited as meaningful by PAB members was the creation of a recruitment video. In contrast, the research team considered the most impactful PAB recommendation to be omission of pneumatic compression boots as a study variable. PAB members spoke highly of their involvement in the trial and emphasized shared decision-making in the patient-physician relationship. Conclusion: Researchers and PAB members had different opinions about which PAB contributions were most impactful to the study. This likely derives from differences in perspective; PAB members focused on patient experience and the patient-surgeon relationship while researchers focused primarily on trial outcomes. PAB contributions led to two major protocol changes that had a substantial positive effect on trial design, recruitment and enrollment. This evaluation adds to the engagement literature, which contains little on what patients think of their involvement in the design and conduct of clinical research studies and will aid in encouraging treatment preference discussions between patient and surgeon, thereby supporting the goal of improved patient outcomes.

患者咨询委员会对临床比较有效性试验的影响:患者和研究者观点的比较。
目的:研究患者咨询委员会(PAB)对髋关节和膝关节置换术后肺栓塞预防(PEPPER)试验(NCT02810704)的设计和实施的贡献,并比较PAB成员和研究人员对该试验的看法。临床协调中心(CCC)成员对PAB进行了评估,他们首先讨论了PAB的贡献,从而设计了半结构化的WebEx访谈,分别询问PAB成员的经验。两名研究小组成员分析了共同主题的访谈记录,并在与PAB成员的面对面会议上进行了讨论和确认。结果:PAB成员最常提到的有意义的贡献是制作了一个招聘视频。相比之下,研究小组认为最具影响力的PAB建议是遗漏气动压缩靴作为研究变量。PAB成员高度评价了他们在试验中的参与,并强调了医患关系中的共同决策。结论:研究人员和PAB成员对哪些PAB贡献对研究影响最大有不同的看法。这可能源于观点的不同;PAB成员关注患者体验和医患关系,而研究人员主要关注试验结果。PAB的贡献导致了两个主要的方案变更,对试验设计、招募和入组产生了实质性的积极影响。这种评估增加了参与文献,这些文献很少包含患者对他们参与临床研究设计和实施的看法,并有助于鼓励患者和外科医生之间讨论治疗偏好,从而支持改善患者预后的目标。
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来源期刊
Journal of comparative effectiveness research
Journal of comparative effectiveness research HEALTH CARE SCIENCES & SERVICES-
CiteScore
3.50
自引率
9.50%
发文量
121
期刊介绍: Journal of Comparative Effectiveness Research provides a rapid-publication platform for debate, and for the presentation of new findings and research methodologies. Through rigorous evaluation and comprehensive coverage, the Journal of Comparative Effectiveness Research provides stakeholders (including patients, clinicians, healthcare purchasers, and health policy makers) with the key data and opinions to make informed and specific decisions on clinical practice.
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