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Background <p>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.</p> Objective <p>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.</p> Methods <p>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.</p> Results <p>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.</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月18日

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  • Aslı Berivan Topçak,
  • Ece Tüsüz Önata,
  • Şeyma Genç,
  • Sefika Ilknur Kökcü Karadag,
  • Nilay Çalışkan,
  • Güler Yıldırım,
  • Hamit Boloğur,
  • Hilal Güngör,
  • Merve Karaca Şahin,
  • Muhammed Fatih Erbay,
  • Hasan Tunç Şarman,
  • Özlem Terzi,
  • Emek Kocatürk,
  • Frank Siebenhaar,
  • Öner Özdemir,
  • Deniz Özçeker

摘要

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.