The value of diagnostic information to patients with suspected multiple sclerosis. Rochester-Toronto MRI Study Group.

OBJECTIVE To determine the value of diagnostic information to patients with suspected multiple sclerosis (MS). Because treatment choices would be only minimally affected by earlier diagnosis for most patients with this clinical problem, this study assessed the "nondecisional" value of diagnosis. DESIGN Prospective survey of patients before and after diagnostic workup, including imaging with magnetic resonance scanning. We assessed the effect of diagnostic information on patients' sense of well-being, as well as direct measures of the utility of information (using time trade-off and willingness-to-pay techniques). SETTING Patients referred from primary care practices for diagnostic workup for suspected MS to neurology clinics and practices. PATIENTS Sixty-eight individuals, mean age 37.5 years, 53 female and 15 male. Thirty-one patients were classified as having "probable MS," and 37 were classified as having "possible MS" by the examining neurologist before workup. MEASUREMENTS Present and future health perception, uncertainty about diagnosis-prognosis, and level of anxiety. Willingness to pay for diagnostic information, quality of life as measured by the time trade-off technique, and psychological state of the patient before and after diagnosis. RESULTS Diagnostic uncertainty fell significantly as a result of the diagnostic workup. Most patients (59/62) said that they were better off having received diagnostic information. Although anxiety seemed to be reduced by testing, overall anxiety levels did not decrease as much as anticipated. Patients also became less optimistic about their future health after testing. On average, patients were willing to forgo 4.5 quality-adjusted life days to receive an earlier diagnosis and their quality of life after diagnosis improved slightly. Subgroups of patients differed in their response to diagnostic information. Those in whom no definitive diagnosis emerged tend to be more anxious rather than being reassured by the "negative" workup. Individuals with "positive" workups became less anxious and expressed favorable feelings about the diagnostic workup even though they often faced a chronic disease. CONCLUSIONS Overall, the diagnostic workup seemed to benefit patients and improve their sense of well-being. However, whether the effects were beneficial or not depended on the results of the diagnostic workup itself. In clinical practice the decision to undergo testing in situations in which definitive treatment is unavailable should be individualized. The potential for negative as well as positive consequences should be recognized.