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Development and validation of a quality of life scale for pediatric mastocytosis
Aslı Berivan Topçak1, Ece Tüsüz Önata2, Şeyma Genç3
1Department of Pediatric Allergy and Immunology, University of Health Sciences, Prof. Dr. Cemil Tascioglu City Hospital, Istanbul, Turkey.
Insights
This study introduces the first validated quality of life scales for pediatric mastocytosis. The Pediatric Mastocytosis Quality of Life (PedMQLS) and PedParentMQLS scales assess social and emotional well-being in children with mastocytosis.
Area of Science:
- Pediatric Hematology
- Quality of Life Research
- Psychometrics
Background:
- Mastocytosis significantly impacts children's quality of life.
- Existing quality of life (QoL) instruments are not disease-specific for pediatric mastocytosis.
- There is a need for validated QoL measures in this population.
Purpose of the Study:
- To develop and validate two novel, disease-specific QoL instruments for pediatric mastocytosis.
- To create the Pediatric Mastocytosis Quality of Life (PedMQLS) scale for children.
- To develop the Pediatric Mastocytosis Quality of Life-Parent (PedParentMQLS) scale for parents.
Main Methods:
- Recruitment of 51 children with mastocytosis and their parents from specialized centers.
- Scale item generation via expert opinion and literature review.
- Evaluation of content validity (Davis method), construct validity (EFA), internal consistency (Cronbach's alpha), and convergent validity.
Main Results:
- Both the PedMQLS and PedParentMQLS scales comprise 14 items with a two-factor structure (social, emotional domains).
- The PedParentMQLS demonstrated high internal consistency (α=0.909).
- The PedMQLS showed acceptable reliability (α=0.785), and convergent validity was supported by significant correlations.
Conclusions:
- The PedMQLS and PedParentMQLS are the first validated QoL instruments tailored for pediatric mastocytosis.
- These scales offer a valuable tool for assessing the impact of mastocytosis on children's lives.
- Further validation in larger, multicenter studies is recommended.
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.
