Health-related quality of life in Chinese children with immune thrombocytopaenia: a multicentre study

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.