21
views
0
recommends
+1 Recommend
0 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Linking genetic counseling communication skills to patient outcomes and experiences using a community-engagement and provider-engagement approach: research protocol for the GC-PRO mixed methods sequential explanatory study

      research-article

      Read this article at

      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Introduction

          In over 50 years since the genetic counseling (GC) profession began, a systematic study of GC communication skills and patient-reported outcomes in actual sessions across multiple clinical specialties has never been conducted. To optimize GC quality and improve efficiency of care, the field must first be able to comprehensively measure GC skills and determine which skills are most critical to achieving positive patient experiences and outcomes. This study aims to characterise GC communication skills using a novel and pragmatic measure and link variations in communication skills to patient-reported outcomes, across clinical specialties and with patients from diverse backgrounds in the USA. Our community-engagement and provider-engagement approach is crucial to develop recommendations for quality, culturally informed GC care, which are greatly needed to improve GC practice.

          Methods and analysis

          A mixed methods, sequential explanatory design will be used to collect and analyze: audio-recorded GC sessions in cancer, cardiac, and prenatal/reproductive genetic indications; pre-visit and post-visit quantitative surveys capturing patient experiences and outcomes and post-visit qualitative interview data. A novel, practical checklist will measure GC communication skills. Coincidence analysis will identify patterns of GC skills that are consistent with high scores on patient-reported measures. Two-level, multilevel models will be used to evaluate how GC communication skills and other session/patient characteristics predict patient-reported outcomes. Four community advisory boards (CABs) and a genetic counselor advisory board will inform the study design and analysis.

          Ethics and dissemination

          This study has been approved by the single Institutional Review Board of the University of Minnesota. This research poses no greater than minimal risk to participants. Results from this study will be shared through national and international conferences and through community-based dissemination as guided by the study’s CABs. A lay summary will also be disseminated to all participants.

          Related collections

          Most cited references69

          • Record: found
          • Abstract: found
          • Article: not found

          Development and testing of a short form of the patient activation measure.

          The Patient Activation Measure (PAM) is a 22-item measure that assesses patient knowledge, skill, and confidence for self-management. The measure was developed using Rasch analyses and is an interval level, unidimensional, Guttman-like measure. The current analysis is aimed at reducing the number of items in the measure while maintaining adequate precision. We relied on an iterative use of Rasch analysis to identify items that could be eliminated without loss of significant precision and reliability. With each item deletion, the item scale locations were recalibrated and the person reliability evaluated to check if and how much of a decline in precision of measurement resulted from the deletion of the item. The data used in the analysis were the same data used in the development of the original 22-item measure. These data were collected in 2003 via a telephone survey of 1,515 randomly selected adults. Principal Findings. The analysis yielded a 13-item measure that has psychometric properties similar to the original 22-item version. The scores for the 13-item measure range in value from 38.6 to 53.0 (on a theoretical 0-100 point scale). The range of values is essentially unchanged from the original 22-item version. Subgroup analysis suggests that there is a slight loss of precision with some subgroups. The results of the analysis indicate that the shortened 13-item version is both reliable and valid.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.

            Community-based participatory research (CBPR) has emerged in the last decades as a transformative research paradigm that bridges the gap between science and practice through community engagement and social action to increase health equity. CBPR expands the potential for the translational sciences to develop, implement, and disseminate effective interventions across diverse communities through strategies to redress power imbalances; facilitate mutual benefit among community and academic partners; and promote reciprocal knowledge translation, incorporating community theories into the research. We identify the barriers and challenges within the intervention and implementation sciences, discuss how CBPR can address these challenges, provide an illustrative research example, and discuss next steps to advance the translational science of CBPR.
              Bookmark
              • Record: found
              • Abstract: not found
              • Article: not found

              Thematic analysis

                Bookmark

                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2024
                17 April 2024
                : 14
                : 4
                : e085472
                Affiliations
                [1 ] departmentGenetics, Cell Biology, and Development , Ringgold_118723University of Minnesota College of Biological Sciences , Minneapolis, Minnesota, USA
                [2 ] Ringgold_27117University of South Florida College of Public Health , Tampa, Florida, USA
                [3 ] departmentEducational and Psychological Studies , Ringgold_7831University of South Florida , Tampa, Florida, USA
                [4 ] Ringgold_20270Huntsman Cancer Institute , Salt Lake City, Utah, USA
                [5 ] departmentDepartment of Communication , Ringgold_359055The University of Utah , Salt Lake City, Utah, USA
                [6 ] departmentJUNTOS Center for Advancing Latino Health , Ringgold_123982University of Kansas Medical Center Department of Population Health , Kansas City, Kansas, USA
                [7 ] Ringgold_43353University of Minnesota School of Public Health , Minneapolis, Minnesota, USA
                [8 ] Shire Scientific, LLC , Minneapolis, Minnesota, USA
                [9 ] departmentSoLaHmo Partnership for Health and Wellness , Community-University Health Care Center , Minneapolis, Minnesota, USA
                Author notes
                [Correspondence to ] Dr Heather A Zierhut; zier0034@ 123456umn.edu
                Author information
                http://orcid.org/0000-0002-7560-1826
                Article
                bmjopen-2024-085472
                10.1136/bmjopen-2024-085472
                11029319
                38631834
                fdbba088-e47d-486b-a6be-f7aacaf5cf8d
                © Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 16 February 2024
                : 19 March 2024
                Categories
                Genetics and Genomics
                1506
                1697
                Protocol
                Custom metadata
                unlocked

                Medicine
                genetics,community-based participatory research,patient reported outcome measures,health services,quality in health care,protocols & guidelines

                Comments

                Comment on this article