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      Men’s view on participation in decisions about prostate-specific antigen (PSA) screening: patient and public involvement in development of a survey

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          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 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.

          Methods

          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.

          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, 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 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.

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          Most cited references22

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          Screening for Prostate Cancer

          In the United States, the lifetime risk of being diagnosed with prostate cancer is approximately 13%, and the lifetime risk of dying of prostate cancer is 2.5%. The median age of death from prostate cancer is 80 years. Many men with prostate cancer never experience symptoms and, without screening, would never know they have the disease. African American men and men with a family history of prostate cancer have an increased risk of prostate cancer compared with other men.
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            GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

            Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites. Electronic supplementary material The online version of this article (doi:10.1186/s40900-017-0062-2) contains supplementary material, which is available to authorized users.
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              Decision making during serious illness: what role do patients really want to play?

              Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.
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                Author and article information

                Contributors
                sbirkeland@health.sdu.dk
                sspedersen@health.sdu.dk
                Anders.Kristian.Haakonsson@rsyd.dk
                MBARRY@mgh.harvard.edu
                nrottmann@health.sdu.dk
                Journal
                BMC Med Inform Decis Mak
                BMC Med Inform Decis Mak
                BMC Medical Informatics and Decision Making
                BioMed Central (London )
                1472-6947
                6 April 2020
                6 April 2020
                2020
                : 20
                : 65
                Affiliations
                [1 ]ISNI 0000 0001 0728 0170, GRID grid.10825.3e, 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
                [2 ]ISNI 0000 0001 0728 0170, GRID grid.10825.3e, Department of Psychology, , University of Southern Denmark, ; Campusvej 55, DK-5230 Odense M, Denmark
                [3 ]ISNI 0000 0004 0512 5013, GRID grid.7143.1, Department of Cardiology, , Odense University Hospital, ; J. B. Winsløwsvej 4, DK-5000 Odense C, Denmark
                [4 ]ISNI 0000 0004 0386 9924, GRID grid.32224.35, Division of General Internal Medicine, , Massachusetts General Hospital & Harvard Medical School, ; 50 Staniford Street, 9th Floor, Boston, MA 02114 USA
                [5 ]ISNI 0000 0004 0512 5013, GRID grid.7143.1, REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care (Odense University Hospital), ; Winsløwparken 19, 3. sal, DK-5000 Odense C, Denmark
                [6 ]ISNI 0000 0001 0728 0170, GRID grid.10825.3e, Department of Clinical Research, , University of Southern Denmark, ; Winsløwparken 19, 3. sal, DK-5000 Odense C, Denmark
                Author information
                http://orcid.org/0000-0001-7857-3181
                Article
                1077
                10.1186/s12911-020-1077-4
                7132968
                32252729
                467e3670-116e-4fed-b29e-565231d9c7fb
                © The Author(s). 2020

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 6 September 2019
                : 24 March 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100005860, Helsefonden;
                Award ID: 17-B-0038
                Award Recipient :
                Funded by: Lilly & Herbert Hansen’s foundation
                Award ID: 100063
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Bioinformatics & Computational biology
                cancer,prostate cancer,health care users’ experiences,user-involvement,patient and public involvement,patient engagement,patient satisfaction,malpractice litigation,bioethics,medical law

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