Development and validation of a quality of life scale for pediatric mastocytosis.

BACKGROUND

Mastocytosis imposes a considerable burden on patients' quality of life. While validated QoL instruments are available for adults with systemic mastocytosis, no disease-specific quality-of-life measure has yet been developed for pediatric populations.

OBJECTIVE

This study aimed to develop and validate two disease-specific quality of life instruments-the Pediatric Mastocytosis Quality of Life (PedMQLS) and the Pediatric Mastocytosis Quality of Life-Parent (PedParentMQLS) scales-for use in pediatric mastocytosis.

METHODS

A total of 51 children and their parents were recruited from two specialized tertiary centers in Turkey. Scale items were generated based on expert opinion and literature review. Content validity was evaluated using the Davis method, and construct validity was assessed through exploratory factor analysis (EFA). Internal consistency was measured using Cronbach's alpha, and convergent validity was examined by correlating results with established dermatology-specific quality of life instruments.

RESULTS

Both scales consisted of 14 items and revealed a two-factor structure covering social and emotional domains. Pediatric Mastocytosis Quality of Life-Parent Scale showed high internal consistency (α = 0.909), while the Pediatric Mastocytosis Quality of Life Scale demonstrated acceptable reliability (α = 0.785). Significant correlations with comparable instruments supported the scales' convergent validity.

CONCLUSION

These newly developed scales are the first validated quality of life instruments specific for pediatric mastocytosis. This study is preliminary; validation through multicenter studies with larger sample.