OPEN, Open Patient data Explorative Network, Department of Clinical Research, University of Southern Denmark, J. B. Winsløws Vej 9 a, 3 Floor, DK-5000, Odense C, Denmark.
Department of Psychology, University of Southern Denmark, Campusvej 55, DK-5230, Odense M, Denmark.
BMC Med Inform Decis Mak. 2020 Apr 6;20(1):65. doi: 10.1186/s12911-020-1077-4.
Prostate-Specific Antigen (PSA) screening for early detection of prostate cancer (PCa) may prevent some cancer deaths, but also may miss some cancers or lead to unnecessary and potentially harmful treatment. Therefore, involving patients in decision-making about PSA screening is recommended. However, we know little about the attitude of men regarding participation in decisions about PSA screening and how to assess such attitudes. The purpose of this paper is to describe patient and public participation in the development of a national, web-based case vignette survey for studying men's view on participation in decision-making about PSA screening.
The project group developed a first draft plan for the survey, its vignettes and choice of measurements. This included multiple vignette variants representing various levels of patient participation in decision-making about PSA screening with different outcomes. Additionally, it included questions on respondents' satisfaction with imagined courses of health care, their propensity to initiate a malpractice complaint, their own health care experiences, socio-demography, personality, and preferences for control regarding health care decision-making. Following feedback from a workshop with academic peers on the draft plan, a group of 30 adult men was engaged to help develop case vignette versions and questionnaire items by providing feedback on structure, comprehension, response patterns, and time required to complete the survey. Furthermore, a panel of three patients with PCa experience was assembled to assist development through a separate review-and-feedback process.
Based on reviews of survey drafts, the large group made further suggestions about construction of the survey (e.g. clarification and modification of case vignette versions, deletion of items and adjustment of wording, instructions to guide respondents, replacement of technical terms, and optimization of sequence of survey elements). The patient panel ensured fine-tuning of vignette versions and questionnaire items and helped review the internet version of the survey.
Patient and public involvement during various phases of the survey development helped modify and refine survey structure and content. The survey exemplifies a way to measure health care users' satisfaction with imagined courses of health care and wish to complain, taking into account their characteristics.
前列腺特异性抗原（PSA）筛查可早期发现前列腺癌（PCa），从而预防部分癌症死亡，但也可能会漏诊一些癌症，或导致不必要的、潜在有害的治疗。因此，建议让患者参与 PSA 筛查决策。然而，我们对男性参与 PSA 筛查决策的态度以及如何评估这种态度知之甚少。本文旨在描述患者和公众参与制定全国性的、基于网络的病例情景调查，以研究男性对参与 PSA 筛查决策的看法。
项目组制定了调查、病例情景和测量选择的初步草案计划。这包括多个病例情景变体，代表了不同水平的患者参与 PSA 筛查决策，以及不同的结果。此外，还包括对受访者对想象中的医疗保健过程的满意度、提起医疗事故投诉的倾向、自身的医疗保健经验、社会人口统计学、个性以及对医疗保健决策控制的偏好的问题。在学术同行研讨会上对草案计划提出反馈意见后，邀请了 30 名成年男性参与，帮助开发病例情景版本和问卷项目，对结构、理解、回应模式和完成调查所需的时间提供反馈。此外，还组建了一个由三名具有 PCa 经验的患者组成的小组，通过单独的审查和反馈过程协助开发。
根据对调查草案的审查，大组对调查的构建提出了进一步的建议（例如，澄清和修改病例情景版本、删除项目和调整措辞、指导受访者的说明、替换技术术语以及优化调查要素的顺序）。患者小组对病例情景版本和问卷项目进行了微调，并帮助审查了调查的网络版本。
在调查开发的各个阶段，患者和公众的参与有助于调整和完善调查的结构和内容。该调查体现了一种衡量医疗保健使用者对想象中的医疗保健过程的满意度和投诉意愿的方法，同时考虑了他们的特点。
