Quality of life in paediatric lupus.

ABSTRACT

Paediatric systemic lupus erythematosus (SLE) is associated with significant morbidity and has biopsychosocial implications 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 responses focused primarily on coping and maintaining control of their life despite SLE. 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 understanding of specific factors that assist/ease the coping process and formulating interventions for improving children's/family's self-efficacy and disease management.