Patient engagement in designing and publishing research in prostate cancer: a scoping review
Creators: name: Sutton, Linda
name: Labriola, Matthew
name: Bognanno, Thomas
name: Moneer, Shelby
name: Ghith, Jennifer
name: Rodriguez, Gustavo
name: Moore, Latorya
name: Evuarherhe, Obaro
name: Morgans, Alicia K.
Publisher: name: Taylor & Francis
Year: 2024
Subjects: subject: Medicine
subject: Sociology
subject: FOS: Sociology
subject: Cancer
subject: Science Policy

description: Patients with cancer have the unique ability of being able to offer valuable insights into how cancer therapeutics may impact the overall patient experience and improve clinical outcomes. Patient engagement could therefore contribute to tailoring treatment strategies and research design according to patient needs. This study evaluated patient engagement in prostate cancer research by identifying patient input in the prostate cancer literature. We performed a keyword cluster analysis of articles from multiple databases and congresses in which patients provided input on disease management or were involved in study design, manuscript authorship or presentation of results (patient voice). In total, 112 studies were included. Patients were involved in the design of 11 studies and were credited as authors in four studies. This review suggests a lack of meaningful patient involvement in prostate cancer research and publications. Patients with cancer have first-hand knowledge of what does and does not work for their care. Therefore, their voice is valuable to help improve treatment and guide research. Our goal was to find prostate cancer articles with patient input. We searched databases using keywords related to patient voice. We looked for articles involving patients in designing, writing or presenting the study. Only four out of the 112 articles we identified were published in journals focused on involving patients. Eleven articles involved patients in designing the study. Four articles involved patients in writing the published work. Overall, we did not find many articles where patients had a meaningful role in the study. Prostate cancer treatment and research will likely benefit from more patient input. Prostate cancer patients have first-hand experience with their disease and various prostate cancer treatments. Therefore, they have a unique perspective and a valuable voice to help guide clinical cancer research. Objective: To conduct a scoping review in which keywords related to patient voice (i.e., input from patients on their prostate cancer treatment and management) were used to identify studies in which prostate cancer patients were involved in study design, manuscript authorship or presentation of results. The scoping review included studies that:focused on patients with any stage of prostate cancerwere published in Englishwere related to input from patients on their prostate cancer treatment focused on patients with any stage of prostate cancer were published in English were related to input from patients on their prostate cancer treatment Animal studies and articles published before 2016 were excluded. The scoping review included studies from the following sources:EmbaseMEDLINECochrane Library Embase MEDLINE Cochrane Library Search criteriaSearch strings contained combinations of free text and MeSH terms related to prostate cancer.The search was performed on 11 November 2021. Search strings contained combinations of free text and MeSH terms related to prostate cancer. The search was performed on 11 November 2021. Keyword cluster analysis and random selectionOut of 2224 relevant articles retrieved, 500 articles were randomly selected for search against eligibility criteria. Out of 2224 relevant articles retrieved, 500 articles were randomly selected for search against eligibility criteria. Supplementary searchesMultiple congresses were searched.Search dates: January 2019 to March 2022American Society of Clinical OncologyASCO Genitourinary CancersAmerican Urological AssociationEuropean Association of UrologyEuropean Society for Medical OncologyEuropean Urology OncologyJournal of the Advanced Practitioner in OncologyOncology Nursing SocietySociety of Urologic Nurses and Associates Multiple congresses were searched. Search dates: January 2019 to March 2022American Society of Clinical OncologyASCO Genitourinary CancersAmerican Urological AssociationEuropean Association of UrologyEuropean Society for Medical OncologyEuropean Urology OncologyJournal of the Advanced Practitioner in OncologyOncology Nursing SocietySociety of Urologic Nurses and Associates American Society of Clinical Oncology ASCO Genitourinary Cancers American Urological Association European Association of Urology European Society for Medical Oncology European Urology Oncology Journal of the Advanced Practitioner in Oncology Oncology Nursing Society Society of Urologic Nurses and Associates The following information was extracted from each eligible article:AuthorsTitleYear of publicationType of articleStudy objectives and methodsStudy outcomesPatient involvement in prostate cancer researchTreatment and management Authors Title Year of publication Type of article Study objectives and methods Study outcomes Patient involvement in prostate cancer research Treatment and management Following full-text review and supplementary searches, 112 relevant articles were identified for further review (76 from the main searches after randomization and 36 from supplementary searches). 52 were published papers, 55 were congress abstracts and five were oral presentations. Only 11 studies included patients involved in study design. Only four studies included patients as authors. Thirteen studies focused on racial differences in prostate cancer treatment. This scoping review provides an overview of the literature between 2016 and 2021 on patient involvement in prostate cancer research. Our findings indicate a lack of involvement of patients in study design and authorship during this time period, and highlight an unmet need for increased patient participation in prostate cancer research.