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Quality of life in paediatric lupus

Robert Wood Johnson Medical School - UMDNJ, New Brunswick, NJ, USA, lnmoorthy{at}mac.com

L Robbins

Hospital For Special Surgery, New York, NY, USA

M J Harrison

Hospital For Special Surgery, New York, NY, USA

M GE Peterson

Hospital For Special Surgery, New York, NY, USA

N Cox

Hospital For Special Surgery, New York, NY, USA

K B Onel

Hospital For Special Surgery, New York, NY, USA

T JA Lehman

Hospital For Special Surgery, New York, NY, USA

Paediatric systemic lupus erythematosus (SLE) is associated with significant 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 responsesfocused 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 differentfacets of QOL in these children is critical for the understandingof specific factors that assist/ease the coping process and formulating interventions for improving children’s/family’s self-efficacy and disease management.

Key Words: coping • paediatric • quality of life • systemic lupus erythematosus

Lupus, Vol. 13, No. 4, 234-240 (2004)
DOI: 10.1191/0961203304lu1003oa


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