Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia
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ORIGINAL ARTICLE
Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia Jada G. Hamilton, PhD, MPH & Sadie P. Hutson, PhD, RN, WHNP, BC & Richard P. Moser, PhD & Sarah C. Kobrin, PhD, MPH & Amy E. Frohnmayer, MA & Blanche P. Alter, MD, MPH & Paul K. J. Han, MD, MA, MPH
# The Society of Behavioral Medicine (outside the USA) 2013
Abstract Background Effects of different sources of medical uncertainty on people’s health-related cognitions, emotions, and decision making have yet to be systematically examined. Purpose The aim of this study is to examine how uncertainties arising from different sources are associated with decision making regarding stem cell transplantation in Fanconi anemia, a rare, inherited bone marrow failure syndrome that typically presents during childhood. J. G. Hamilton (*) Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute (NCI), National Institutes of Health (NIH), 9609 Medical Center Drive, Room 3E632, Rockville, MD 20850, USA e-mail: [email protected] J. G. Hamilton : S. C. Kobrin Process of Care Research Branch, Division of Cancer Control and Population Sciences, NCI, NIH, Rockville, MD, USA S. P. Hutson College of Nursing, University of Tennessee, Knoxville, TN, USA S. P. Hutson : B. P. Alter Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, NCI, NIH, Rockville, MD, USA R. P. Moser : S. C. Kobrin Science of Research and Technology Branch, Division of Cancer Control and Population Sciences, NCI, NIH, Rockville, MD, USA A. E. Frohnmayer Knight Cancer Institute, Oregon Health & Sciences University, Portland, OR, USA P. K. J. Han Center for Outcomes Research and Evaluation, Maine Medical Center Research Institute, Scarborough, ME, USA
Methods Data were collected through a cross-sectional survey of 178 parents of 126 Fanconi anemia patients. Results Two distinct sources of uncertainty were associated with decision outcomes: probability was associated with a lower likelihood of choosing stem cell transplantation, and ambiguity due to conflicting expert opinions was associated with greater decision-making difficulty. Concern about transplantation may mediate these associations. Conclusions Different sources of uncertainty have different effects on Fanconi anemia treatment decisions, which may be mediated by parents’ emotional reactions. Further research is needed to elucidate these effects and help Fanconi anemia families cope with uncertainty. Keywords Ambiguity . Uncertainty . Medical decision making . Fanconi anemia . Hematopoietic stem cell transplantation Medicine and healthcare provide numerous situations in which people may experience uncertainty, defined as the subjective perception of ignorance [1]. For example, people may perceive uncertainty when expert opinions regarding cancer screening recommendations conflict, when evidence about a treatment’s efficacy in a clinical trial is limited, or when disease risk estimates provided by online risk calculators, di
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