Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study期刊界 All Journals 搜尽天下杂志传播学术成果专业期刊搜索期刊信息化学术搜索

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

Authors:	Lisa Mackenzie Elise Mansfield Anne Herrmann Alice Grady Tiffany-Jane Evans Robert Sanson-Fisher

Affiliation:	1. Health Behaviour Research Collaborative & Priority Research Centre for Health Behaviour, School of Medicine and Public Health, University of Newcastle, Newcastle, Australia;2. Hunter Medical Research Institute, Newcastle, Australia;3. Department of Haematology and Internal Oncology, University Hospital Regensburg, F. J. Strauß Allee 11, 93053 Regensburg, Germany;4. Hunter New England Local Health District, Population Health, Wallsend, Australia;5. Clinical Research, Design and Statistics, Hunter Medical Research Institute, Newcastle, Australia;1. High Point University, Fred Wilson School of Pharmacy, Department of Clinical Sciences, United States;2. Department of Pharmacy Practice & Administration, Western University of Health Sciences, College of Pharmacy, United States;1. Division of Public Health Sciences, Wake Forest School of Medicine, USA;2. School of Nursing, Middle Tennessee State University, USA;3. Center for Patient and Professional Advocacy, Vanderbilt University Medical Center, USA;4. Osher Center for Integrative Medicine at Vanderbilt, USA;5. Center for Health Services Research, Vanderbilt University Medical Center, USA;1. Univ. Lille, CNRS, UMR 9193 - SCALab - Sciences Cognitives et Sciences Affectives, F-59000 Lille, France;2. Department of Human and Social Sciences, Centre Léon Bérard, Lyon, France;3. Department of Digestive and Oncological Surgery, University of Lille, Claude Huriez University Hospital, Lille, France;4. Department of General Oncology, Centre Oscar Lambret, Lille, France;5. Department of Medical Oncology, University of Lille, Claude Huriez University Hospital, Lille, France;6. University of Lille, CNRS, Inserm, CHU Lille, Institut Pasteur de Lille, UMR9020 – UMR-S 1277 – Canther – Cancer Heterogeneity, Plasticity and Resistance to Therapies, F-59000, Lille, France;7. Jean-Pierre Aubert Research Center, Neurosciences and Cancer, University of Lille, IMR-S 1172-JPArc, Lille, France;1. Johns Hopkins University School of Medicine, Baltimore MD – 733 N Broadway, Baltimore, MD, 21205, USA;2. University of Maryland School of Medicine, Baltimore MD – 655 W Baltimore St S, Baltimore, MD, 21201, USA;3. Children’s National Medical Center, Washington DC – 110 Irving St NW, Washington, DC, 20010, USA;1. The Univeristy of Alabama, Tuscaloosa, AL 35487;2. HudsonAlpha Institute for Biotechnology, 800 Hudson Way, Huntsville, AL, 35806, United States;1. Icahn School of Medicine at Mount Sinai, New York, NY, United States;2. Department of Psychology, Pace University, New York, NY, United States;3. ISO, Verisk Analytics, Jersey City, NJ, United States;4. Institute for Translational Epidemiology, Department of Population Health Science and Policy, The Icahn School of Medicine at Mount Sinai, New York, NY, United States;5. International Center for Health Outcomes and Innovation Research, the Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, NY, United States;6. Division of General Internal Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL, United States;7. Division of Pulmonary and Critical Care Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, United States;8. Division of General Internal Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, United States

Abstract:	ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory.MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles.ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome.ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions.Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.

Keywords:	Breast neoplasms/psychology Breast neoplasms/therapy Decision-making experience Decision-making preference Decision making Patient participation Patient preference Surveys and questionnaires
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