Sources of uncertainty and their association with medical decision making: exploring mechanisms in Fanconi anemia.

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.