Quality of life in paediatric lupus

Area of Science:

• Pediatric Rheumatology
• Psychosocial Health
• Quality of Life Research

Background:

• Childhood-onset systemic lupus erythematosus (cSLE) presents significant morbidity.
• cSLE and its treatments carry substantial biopsychosocial implications for affected children.
• Understanding quality of life (QOL) is crucial for managing pediatric SLE.

Purpose of the Study:

• To identify specific domains of quality of life impacted by cSLE in children.
• To explore the lived experiences of children with cSLE and their parents.
• To inform interventions aimed at improving self-efficacy and disease management.

Main Methods:

• Qualitative study involving children diagnosed with cSLE and their parents.
• A single open-ended question was posed to participants regarding their experience with lupus.
• Thematic analysis was used to interpret children's and parents' responses.

Main Results:

• Children's responses centered on themes of coping and maintaining life control despite cSLE.
• Parents' themes included their own coping efforts and emotional responses (sadness, appreciation) to their child's coping process.
• Identified themes highlight the importance of psychosocial factors in pediatric SLE.

Conclusions:

• cSLE significantly impacts children's QOL, with coping and control being central concerns.
• Parental perspectives offer crucial insights into the family's adaptation to childhood lupus.
• Further qualitative research is essential for developing targeted interventions to enhance coping and self-management in pediatric SLE.