Quality of life in paediatric lupus

Paediatric systemic lupus erythematosus (SLE) is associated with signi cant morbidity and has biopsychosocialimplications resulting from the disease and its treatment.The aim of this study was to identify domains of quality of life (QOL) impacted by SLE in children. Children with SLE and their parents were asked a single open-ended question related to lupus. Themes derived from children’s responsesfocusedprimarily on coping and maintaining control of their life despiteSLE. Themes from the parents ’ responses were twofold: a) efforts to cope with their child having SLE; and b) appreciation/sadness in connection with their children’s coping process. Qualitative exploration of different facets of QOL in these children is critical for the understandingof speci c factors that assist/ ease the coping process and formulating interventions for improving children’s/family’s self-ef cacy and disease management. Lupus (2004) 13, 234–240. Key words: coping; paediatric; quality of life; systemic lupus erythematosu