{
  "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.",
  "authors": [
    {
      "affiliations": [
        "Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China"
      ],
      "name": "Shuxian Huang"
    },
    {
      "affiliations": [
        "Oncology Discipline Group, The Key Laboratory of Pediatric Hematology and Oncology Diseases of Wenzhou, Department of Hematology and Oncology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Shanghai, China"
      ],
      "name": "Min Chen"
    },
    {
      "affiliations": [
        "Department of Hematology, Shanghai Children’s Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China"
      ],
      "name": "Hui Zhang"
    },
    {
      "affiliations": [
        "Fujian Provincial Key Laboratory on Hematology, Fujian Institute of Hematology, Fuzhou, China"
      ],
      "name": "Yongzhi Zheng"
    },
    {
      "affiliations": [
        "Fujian Children's Hospital (Fujian Branch of Shanghai Children’s Medical Center), College of Clinical Medicine for Obstetrics & Gynecology and Pediatrics, Fujian Medical University, Fuzhou, China"
      ],
      "name": "Sihan Huang"
    },
    {
      "affiliations": [
        "Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China"
      ],
      "name": "Zhiyuan Chen"
    },
    {
      "affiliations": [
        "Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China"
      ],
      "name": "Jinhong Luo"
    },
    {
      "affiliations": [
        "Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China"
      ],
      "name": "Liyun Xiao"
    },
    {
      "affiliations": [
        "Department of Hematology/Oncology, Pediatrics, Second Hospital of Anhui Medical University, Hefei, China"
      ],
      "name": "Jinhua Chu"
    },
    {
      "affiliations": [
        "Department of Pediatrics, The First Affiliated Hospital of Xiamen University, Xiamen, China"
      ],
      "name": "Biyun Guo"
    },
    {
      "affiliations": [
        "People’s Hospital of Guangxi Zhuang Autonomous Region, Nanning, Guangxi, China"
      ],
      "name": "Yan Dai"
    },
    {
      "affiliations": [
        "Department of Pediatrics, Longyan First Hospital of Fujian Medical University, Longyan, China"
      ],
      "name": "Yuantao Huang"
    },
    {
      "affiliations": [
        "Department of Hematology, Shanghai Children’s Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China"
      ],
      "name": "Shuhong Shen"
    },
    {
      "affiliations": [
        "Oncology Discipline Group, The Key Laboratory of Pediatric Hematology and Oncology Diseases of Wenzhou, Department of Hematology and Oncology, The Second Affiliated Hospital and Yuying Children’s Hospital of Wenzhou Medical University, Shanghai, China"
      ],
      "name": "Haixia Zhou"
    },
    {
      "affiliations": [
        "Department of Pediatric Hematology, Rheumatology and Nephrology, Zhangzhou Affiliated Hospital of Fujian Medical University, Zhangzhou, China"
      ],
      "name": "Kaizhi Weng"
    }
  ],
  "title": "Health-related quality of life in Chinese children with immune thrombocytopaenia: a multicentre study",
  "uid": "4f979718-c1e3-54a7-bf09-c72f210deb01"
}