To evaluate the long-term outcome in a cohort of patients with primary SS (PSS) using the recently proposed Sjogren's Syndrome Damage Index.
We reviewed the clinical records of 60 patients attending our Sjögren's clinic at University College London Hospital, who strictly fulfilled the American-European Consensus Group criteria and on whom we had a minimum of 10 years of follow-up (or until death) during this decade. However, we could not retrospectively identify damage in the oral domain as this had not been recorded reliably.
Fifty-five per cent of patients in this study had no damage after 10 years of disease--a lower figure than our comparative group of patients with SLE (32.4%). Damage accrual was mostly in the ocular domain, parotid swelling and malignancy categories. There was a 6-fold increase in the 'malignancy damage' compared with the 2-fold increase in the total damage score in PSS.
Unlike patients with SLE, it is clear that fewer patients with SS develop permanent damage, even after 10 years of follow-up. These data are thus encouraging but clearly larger numbers of patients need to be assessed.