Men’s view on participation in decisions about Prostate-Specific Antigen (PSA) screening: Patient and public involvement in development of a survey
Abstract Background: 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 may be warranted. However, we know little about the views of men on their participation in decisions about PSA screening and how to assess such views. 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. Methods: The survey includes multiple vignette variants representing various levels of patient participation in decision-making about PSA screening with different outcomes. Additionally, the survey includes 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 study aims and procedures, 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. Results: 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, changes of 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. Conclusions: Patient and public involvement during various phases of the survey development helped to improve 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.