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Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia

  • Original Article
  • Published:
Annals of Behavioral Medicine

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.

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.

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Acknowledgments

This research was supported in part by the Intramural Research Program of the National Institutes of Health and the National Cancer Institute in Rockville, MD, USA (SPH, PKJH, BPA). We thank Drs. Andrew Hayes and Kristopher Preacher for analytic guidance. We are extremely grateful to the Fanconi Anemia Research Fund and Fanconi Canada for mailing questionnaires, and to all participating families.

Conflict of Interest

The authors have no conflicts of interests or financial interests to disclose.

Author information

Authors and Affiliations

  1. 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

    Jada G. Hamilton PhD, MPH

  2. Process of Care Research Branch, Division of Cancer Control and Population Sciences, NCI, NIH, Rockville, MD, USA

    Jada G. Hamilton PhD, MPH & Sarah C. Kobrin PhD, MPH

  3. College of Nursing, University of Tennessee, Knoxville, TN, USA

    Sadie P. Hutson PhD, RN, WHNP, BC

  4. Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, NCI, NIH, Rockville, MD, USA

    Sadie P. Hutson PhD, RN, WHNP, BC & Blanche P. Alter MD, MPH

  5. Science of Research and Technology Branch, Division of Cancer Control and Population Sciences, NCI, NIH, Rockville, MD, USA

    Richard P. Moser PhD & Sarah C. Kobrin PhD, MPH

  6. Knight Cancer Institute, Oregon Health & Sciences University, Portland, OR, USA

    Amy E. Frohnmayer MA

  7. Center for Outcomes Research and Evaluation, Maine Medical Center Research Institute, Scarborough, ME, USA

    Paul K. J. Han MD, MA, MPH

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  1. Jada G. Hamilton PhD, MPH
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  2. Sadie P. Hutson PhD, RN, WHNP, BC
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  6. Blanche P. Alter MD, MPH
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Corresponding author

Correspondence to Jada G. Hamilton PhD, MPH.

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Hamilton, J.G., Hutson, S.P., Moser, R.P. et al. Sources of Uncertainty and Their Association with Medical Decision Making: Exploring Mechanisms in Fanconi Anemia. ann. behav. med. 46, 204–216 (2013). https://doi.org/10.1007/s12160-013-9507-5

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  • DOI: https://doi.org/10.1007/s12160-013-9507-5

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