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Health-related quality of life in Chinese children with immune thrombocytopaenia: a multicentre study
Shuxian Huang1, Min Chen2, Hui Zhang3
1Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China.
Insights
Parents consistently reported poorer health-related quality of life (HRQoL) in children with immune thrombocytopaenia (ITP) than the children themselves. This highlights the need for culturally sensitive interventions in paediatric ITP care.
Area of Science:
- Paediatric Haematology
- Health-Related Quality of Life (HRQoL) Research
- Psychosocial Health in Chronic Illness
Background:
- Assesses HRQoL in Chinese children newly diagnosed with immune thrombocytopaenia (ITP).
- Utilizes the disease-specific Kids' ITP Tools (KITs) scale for comprehensive evaluation.
- Addresses a gap in longitudinal HRQoL data for South and East Asian paediatric populations.
Purpose of the Study:
- To systematically evaluate HRQoL in Chinese children with newly diagnosed ITP.
- To assess the reliability and cross-cultural validity of the KITs scale in this population.
- To identify factors influencing HRQoL and parent-child discrepancies.
Main Methods:
- Prospective, multicentre study involving 88 child self-reports and 215 parent proxy-reports.
- HRQoL measured using validated KITs scales at diagnosis and multiple follow-ups (1 week to 12 months).
- Analyses included Cronbach's alpha for reliability, mixed-effects models, and Spearman correlation.
Main Results:
- Significant parent-child discordance in HRQoL scores (20.06-point gap), with parents reporting worse outcomes.
- Excellent scale reliability (parent α=0.944, child α=0.910).
- No association between baseline platelet counts and HRQoL; transient HRQoL reductions noted post-bone marrow aspiration and glucocorticoid therapy.
Conclusions:
- Confirms cross-cultural validity and reliability of the KITs scale for paediatric ITP.
- Highlights significant parent-child HRQoL discrepancies, influenced by cultural and psychosocial factors.
- Underscores the need for culturally informed, family-centered psychosocial interventions in paediatric haematology.
Background:
This multicentre, prospective study systematically evaluated health-related quality of life (HRQoL) in Chinese children with newly diagnosed immune thrombocytopaenia (ITP) using the disease-specific Kids' ITP Tools (KITs) scale. The study addresses a critical gap in longitudinal HRQoL data, particularly within South and East Asian paediatric populations.
Methods:
A total of 88 child self-reports, 215 parent proxy-reports and 303 parent-completed HRQoL assessments were collected from nine tertiary hospitals (2023 and 2025). HRQoL was measured using validated KITs scales (child self-report ≥7 years, parent proxy-report <7 years) at diagnosis and 1-week, 1-month, 3-month and 12-month follow-ups. Clinical variables were systematically recorded. Analyses included internal consistency (Cronbach's α), mixed-effects models and Spearman correlation testing.
Results:
The cohort comprised 88 self-reported children (mean age 9.2 years) and 215 parent proxy-reports (mean age 3.2 years). Major findings included: (1) significant parent-child discordance in HRQoL scores (mean difference 20.06 points at diagnosis, p<0.001), with parents consistently reporting poorer HRQoL; (2) excellent scale reliability (parent α=0.944, child α=0.910); (3) no association between baseline platelet counts and HRQoL (all p>0.05); (4) transient HRQoL reductions following bone marrow aspiration and glucocorticoid therapy and (5) age-specific patterns-older children reported greater family-related distress (p=0.044), whereas parents of younger children reported greater procedural distress (p<0.001).
Conclusion:
This study supports the cross-cultural validity and reliability of the KITs scale in paediatric ITP. It reveals marked parent-child discrepancies (20.06-point gap) likely influenced by cultural and psychosocial factors. These findings highlight the need for culturally informed family-centred psychosocial interventions and provide a foundation for international HRQoL comparisons and culturally adaptive clinical care models in paediatric haematology.
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