[Information about the diagnosis: a subjective experience of patients with multiple sclerosis and rheumatoid...

It may be difficult to determine the adequate mement, the information content and the most convenient person to inform patients with chronic, incurable disorders with uncertain prognosis as sclerosis multiple (MS).

To gain information on how these aspects had been carried-out and the extent to which patients felt satisfied, we studied 60 definite MS ambulatory patients by means of a semistructured questionnaire attending a hospital-based MS unit. The results were compared with those from 40 patients with rheumatoid arthritis (RA), a chronic disabling disorder of the locomotor system with variable course, examined in a similar way.

In the vast majority of patients (81.7 and 82.9%, respectively) in both groups the diagnosis had been delivered by a specialist, a point on which most patients agreed upon as convenient. However, most MS patients (78.4%) and nearly all of those with RA (97.6%) should have desired to receive information on their diagnosis as soon as this might had been firmly established. Though more than half the patients (61.7 of MS and 56.1% of RA) admitted to have developed depressive symptoms following information on their diagnosis, a majority expressed their desire to have been informed early about 'all the truth' regarding their prognosis (78.4 and 87.8%, respectively).

Though data from this study should be taken with caution when applied to MS patients shortly after experiencing their first symptoms, and it is therefore unwise to give rigid rules, the vast majority of MS patients express the desire to receive early, accurate, and individualized information on their diagnosis provided by a competent specialist.