Jones Salene M W, Kent Erin E, Caru Maxime, Arem Hannah, Kim Youngmee, Song Lixin, Langer Shelby L
Public Health Sciences Division, Fred Hutchinson Cancer Center, 1100 Fairview Ave N, Seattle, WA, 98109, USA.
Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, USA.
J Cancer Educ. 2025 Aug 18. doi: 10.1007/s13187-025-02709-9.
Patient-reported outcomes (PROs) and caregiver-reported outcomes (CROs) are tools for evaluating behavioral medicine interventions and for bringing the patient voice into observational research. This study aimed to identify barriers to using PROs/CROs in behavioral cancer research and to equitably address those barriers. Forty-nine members of a cancer special interest group from a research society completed surveys in early 2023 about needs related to the use of PROs and CROs. Descriptive statistics were used to summarize results. Most participants used PROs (n = 34, 69%) but few frequently used CROs (n = 12, 24%). More than 80% of the sample were familiar with common PRO/CRO properties such as reliability and validity. Participants reported considering a wide variety of population characteristics when using PROs and CROs, including language (n = 31, 70%) and education level (n = 31, 70%). The most common barriers to using PROs/CROs in research were time, funding, and technology with many reflecting potential reasons for inequitable representation of certain groups in research. Webinars were the most preferred educational format (n = 38, 78%) for resources related to PROs/CROs. Many participants encountered barriers to using PROs in research. Creation and dissemination of educational resources to promote equitable use of PROs/CROs across underrepresented groups and overcome common barriers to use of these measurement tools are warranted.
患者报告结局(PROs)和照护者报告结局(CROs)是用于评估行为医学干预措施以及将患者声音纳入观察性研究的工具。本研究旨在确定在行为癌症研究中使用PROs/CROs的障碍,并公平地解决这些障碍。一个研究协会的癌症特别兴趣小组的49名成员在2023年初完成了关于使用PROs和CROs相关需求的调查。采用描述性统计来总结结果。大多数参与者使用PROs(n = 34,69%),但很少有人经常使用CROs(n = 12,24%)。超过80%的样本熟悉常见的PRO/CRO属性,如信度和效度。参与者报告在使用PROs和CROs时会考虑各种各样的人群特征,包括语言(n = 31,70%)和教育水平(n = 31,70%)。在研究中使用PROs/CROs最常见的障碍是时间、资金和技术,许多障碍反映了某些群体在研究中代表性不平等的潜在原因。网络研讨会是与PROs/CROs相关资源最受欢迎的教育形式(n = 38,78%)。许多参与者在研究中使用PROs时遇到了障碍。有必要创建和传播教育资源,以促进在代表性不足的群体中公平使用PROs/CROs,并克服使用这些测量工具的常见障碍。