To systematically evaluate health-related quality of life (HRQoL) in Chinese children with newly diagnosed immune thrombocytopaenia (ITP) using the disease-specific Kids’ ITP Tools (KITs) scale.
Approach:
Study Design: A multicenter, prospective cohort study conducted across nine tertiary hospitals in China from 2023 to 2025.
Participants: 88 child self-reports, 215 parent proxy-reports, and 303 parent-completed HRQoL assessments were collected.
HRQoL Measurement: HRQoL was measured using validated KITs scales at diagnosis and follow-ups (1-week, 1-month, 3-month, and 12-month).
Data Analysis: Analyses included internal consistency (Cronbach’s α), mixed-effects models, and Spearman correlation testing.
Key Findings:
Significant parent-child discordance in HRQoL scores (mean difference 20.06 points at diagnosis, p<0.001).
No association between baseline platelet counts and HRQoL (all p>0.05).
Transient HRQoL reductions following bone marrow aspiration and glucocorticoid therapy.
Older children reported greater family-related distress (p=0.044), while parents of younger children reported greater procedural distress (p<0.001).
Interpretation:
The study supports the cross-cultural validity and reliability of the KITs scale in pediatric ITP, revealing marked parent-child discrepancies likely influenced by cultural and psychosocial factors.
Limitations:
The study is limited to a specific cultural context and may not be generalizable to other populations.
The sample size, while substantial, may not capture all variations in HRQoL across different demographics.
Conclusion:
The findings highlight the need for culturally informed family-centered psychosocial interventions and provide a foundation for international HRQoL comparisons and culturally adaptive clinical care models in pediatric haematology.
