Measuring permanent damage in pediatric systemic lupus erythematosus.

The survival rates in pediatric systemic lupus erythematosus (pSLE) have improved greatly over recent decades. Increased life expectancy has meant that more children are growing up with the consequences of chronic disease and prolonged therapy. Assessing complications of disease and its therapy becomes an important outcome measure by which to evaluate our therapeutic interventions and appraise quality of life. In this paper we review the development of the Systemic Lupus International Collaborative Clinics (SLICC)/American College of Rheumatology (ACR) Damage Index (SDI) and its application to the pSLE population. We examine the profile of damage in pSLE as identified by the SDI. However we also critically appraise its application and identify potential limitations in the SDI as a measure of permanent disease damage in children. In this paper we put forth suggestions for additional domains addressing pediatric specific issues such as decreased final height and delayed puberty. We also suggest modifications to domains of gonadal failure, diabetes mellitus, cognitive impairment and osteonecrosis in the SDI to make it more reflective of the damage phenomenon observed in pediatrics.