Health-related quality of life in Chinese children with immune thrombocytopaenia: a multicentre study
Year: 2026
Type: article
Study design: Observational Study
Abstract: 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.
Source: BMJ Paediatrics Open
Institutions: Fujian Medical University, Shanghai Children's Medical Center, Wenzhou Medical University, Second Affiliated Hospital & Yuying Children's Hospital of Wenzhou Medical University, Shanghai Jiao Tong University, Anhui Medical University, Second Affiliated Hospital of Anhui Medical University, First Affiliated Hospital of Xiamen University, The People's Hospital of Guangxi Zhuang Autonomous Region
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: diamond
Funder: Children's Health Foundation
OpenAlex ID: W7147674033
