THE VALUE OF DIAGNOSTIC INFORMATION TO PATIENTS WITH SUSPECTED MULTIPLE-SCLEROSIS

Objective: To determine the value of diagnostic information to patient s with suspected multiple sclerosis (MS). Because treatment choices wo uld 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 sca nning. We assessed the effect of diagnostic information on patients' s ense of well-being, as well as direct measures of the utility of infor mation (using time tradeoff and willingness-to-pay techniques). Settin g: Patients referred from primary care practices for diagnostic workup for suspected MS to neurology clinics and practices. Patients: Sixty- eight individuals, mean age 3 7.5 years, 53 female and 15 male. Thirty -one patients were classified as having ''probable MS,'' and 37 were c lassifed as having ''possible MS'' by the examining neurologist before workup.Measurements: Present and future health perception, uncertaint y about diagnosis-prognosis, and level of anxiety. Willingness to pay for diagnostic information, quality of life as measured by the time tr ade-off technique, and psychological state of the patient before and a fter diagnosis. Results: Diagnostic uncertainty fell significantly as a result of the diagnostic workup. Most patients (59/62) said that the y were better off having received diagnostic information. Although anx iety seemed to be reduced by testing, overall anxiety levels did not d ecrease as much as anticipated. Patients also became less optimistic a bout their future health after testing. On average, patients were will ing to forgo 4.5 quality-adjusted life days to receive an earlier diag nosis and their quality of life after diagnosis improved slightly. Sub groups of patients differed in their response to diagnostic informatio n. Those in whom no definitive diagnosis emerged tend to be more anxio us 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 c hronic disease. Conclusions: Overall, the diagnostic workup seemed to benefit patients and improve their sense of well-being. However, wheth er the effects were beneficial or not depended on the results of the d iagnostic workup itself. In clinical practice the decision to undergo testing in situations in which definitive treatment is unavailable sho uld be individualized. The potential for negative as well as positive consequences should be recognized.