Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers |
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| Authors: | Gemme Campbell-Salome Adam H. Buchanan Miranda L.G. Hallquist Alanna K. Rahm Heather Rocha Amy C. Sturm |
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| Affiliation: | 1. New York University Grossman School of Medicine, Department of Population Health, New York, NY 10016, United States;2. Division of Medical Oncology, Department of Medicine, University of Colorado School of Medicine, Aurora, CO 80045, United States;3. Cancer Prevention and Control Program, University of Colorado Cancer Center, Aurora, CO 80045, United States;4. Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa FL 33612, United States;1. Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA;2. College of Journalism and Communications, University of Florida, Gainesville, FL, USA;3. College of Medicine, University of Florida, Gainesville, FL, USA;4. Department of Psychology, University of Arizona, Tucson, AZ, USA;5. Weill Cornell Medical College, New York, NY, USA;1. Hebrew University Hadaasah, Faculty of Medicine. Jerusalem, Israel;2. Clinical Psychologist Haifa University, Israel;1. Department of Humanities and Social Sciences, University of California, San Francisco, 1450 3rd St., San Francisco, CA 94158, USA;2. Division of Medical Genetics, Department of Medicine, University of Washington Medical Center, 1705 NE Pacific St. Box 357720, Seattle, WA 98195, USA;3. Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA;4. Department of General Internal Medicine, University of California, San Francisco, 1450 3rd St. Box 0128, San Francisco, CA 94158, USA;5. RTI International, 701 13th St. NW, Washington, D.C., 20005, USA;6. Denver Health and Hospital Authority, MC 3150, 777 Bannock, Denver, CO 80204, USA;7. Kaiser Permanente Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227, USA;8. Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Hospital and Research Institute, M/S JMB-6, 1900 Ninth Ave., Seattle, WA 98101, USA;1. The Univeristy of Alabama, Tuscaloosa, AL 35487;2. HudsonAlpha Institute for Biotechnology, 800 Hudson Way, Huntsville, AL, 35806, United States;1. National Human Genome Research Institute, National Institutes of Health, Bethesda, USA;2. Genomic Medicine Institute, Geisinger, Danville, USA;3. Behavioral Research Program, National Cancer Institute, Bethesda, USA;4. Department of Genetic Medicine, Johns Hopkins University, Baltimore, USA;5. Johns Hopkins Bloomberg School of Public Health, Department of Health, Behavior and Society, Baltimore, USA |
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| Abstract: | ObjectiveExamine the uncertainty management process of individuals with Lynch syndrome (LS).Methods19 phone interviews were conducted with individuals with LS. The interview guide included questions on family communication, risk perceptions, and uncertainty management. Data were analyzed using the constant comparison method to code for emergent themes.ResultsQualitative analysis found individuals with LS tried to manage their uncertainty through preventive care, but were often confounded by healthcare barriers. Healthcare barriers included cost and insurance issues, absence of coordinated care, insufficient provider knowledge, and lack of patient-centered communication. Participants reported increased uncertainty and anxiety due to these barriers and used alternative uncertainty management strategies such as advocating for themselves with providers, seeking information online, and communicating with family for emotional support.ConclusionHealthcare barriers identified in this study exacerbated uncertainty and anxiety for individuals with LS and challenged their ability to engage in preventive care. In response, participants used alternative uncertainty management strategies to reduce their uncertainty, which may have unintended negative consequences.Practice implicationsFindings support the need for providers to partner with specialists in genetics and/or LS to better care for individuals with LS. Findings highlight opportunities for interventions in healthcare to better support individuals with LS. |
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| Keywords: | Lynch syndrome Uncertainty Healthcare barriers Qualitative |
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