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Negotiating the diagnostic uncertainty of contested illnesses: physician practices and paradigms

City University of New York, USA, dswoboda{at}york.cuny.edu

In the absence of scientific consensus about contested illnesses such as Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivities (MCS), and Gulf War Syndrome (GWS), physicians must make sense of competing accounts and develop practices for patient evaluation. A survey of 800 United States physicians examined physician propensity to diagnose CFS, MCS, and GWS, and the factors shaping clinical decision making. Results indicate that a substantial portion of physicians, including nonexperts, are diagnosing CFS, MCS, and GWS. Diagnosing physicians manage the uncertainty associated with these illnesses by using strategies that enhance bounded rationality and aid in thinking beyond current disease models. Strategies include consulting ancillary information sources, conducting analytically informed testing, and considering physiological explanations of causation. By relying on these practices and paradigms, physicians fit CFS, MCS, and GWS into an explanatory system that makes them credible and understandable to them, their patients, and the medical community. Findings suggest that physicians employ rational decision making for diagnosing contested illnesses, creating a blueprint of how illnesses lacking conclusive pathogenic and etiological explanations can be diagnosed. Findings also suggest that patients with contested illnesses might benefit from working with physicians who use these diagnostic strategies, since they help manage the complexity and ambiguity of the contested illness diagnostic process and aid in diagnosis. In addition, findings provide a window into how emerging illnesses get diagnosed in the absence of medical and scientific consensus, and suggest that diagnosing physicians advance the legitimacy of controversial illnesses by constructing the means for their diagnosis.

Key Words: contested illnesses • decision making • diagnosis • physicians • uncertainty

Health:, Vol. 12, No. 4, 453-478 (2008)
DOI: 10.1177/1363459308094420


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