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Validity and responsiveness of EQ-5D-Y in children with haematological malignancies and their caregivers

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Abstract

The psychometric properties of the EQ-5D-Y have not been widely tested in severely ill children. The aim of this study was to assess and compare the validity and responsiveness of the EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric inpatients with haematological malignancies and caregivers. Respondents completed the interviewer-administered self-complete or proxy version of the EQ-5D-Y-3L and EQ-5D-Y-5L and an overall health assessment twice on different days. Known-groups validity was assessed by comparing patients who differed in overall health and Eastern Cooperative Oncology Group (ECOG) performance. Responsiveness to worsened health was assessed using standardised effect size (SES) for patients with worsened ECOG grade, self-reported rating, or chemotherapy initiation. Ninety-six dyads completed the baseline questionnaires. A smaller proportion of patients reported “no problems” on the EQ-5D-Y-5L compared to EQ-5D-Y-3L for most of the five dimensions. Patients in poor health reported more problems in all dimensions and had higher EQ-5D-Y-5L level sum score, lower EQ VAS and EQ-5D-Y-3L index scores (Cohen’s d ES: 0.32–1.38 for patients; 0.50–2.05 for caregivers). There was a mild to good responsiveness to worsened health condition based on ECOG (SES: 0.14–0.61 for patients; 0.40–0.96 for caregivers), suggesting the proxy version was slightly responsive than the self-complete version of both instruments. The results demonstrated validity and responsiveness for both the self-complete and proxy versions of the EQ-5D-Y-3L and EQ-5D-Y-5L. The proxy and 5-level versions of the instrument were more sensitive than the self-complete and 3-level versions in this patient group.

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Availability of data and materials

The data that support the findings of this study are openly available in ‘Mendeley’ at: http://dx.doi.org/https://doi.org/10.17632/bdnrj3fsyx.1. http://dx.doi.org/https://doi.org/10.17632/793w7k59c3.1.

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Acknowledgements

We would like to thank the patients and their caregivers from Shanghai Children Medical Centre who participated in the study. Funding for this study was provided by the EuroQol Group (grant number EQ Project 20170330). This work was also sponsored by unrestricted grants from the National Natural Science Foundation of China (grant number 71728010).

Funding

Funding for this study was provided by the EuroQol Group (grant number EQ Project 20170330) and was sponsored by unrestricted grants from the National Natural Science Foundation of China (grant number 7172810).

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Author notes

  1. Wenjing Zhou and Anle Shen contributed equally to this work as the co-first authors.

Authors and Affiliations

  1. Department of Paediatrics, Renji Hospital, School of Medicine, Shanghai Jiaotong University, Shanghai, China

    Wenjing Zhou

  2. Department of Psychiatry, Section Medical Psychology and Psychotherapy, Erasmus Medical Centre, Rotterdam, The Netherlands

    Wenjing Zhou & Jan Busschbach

  3. Department of Pharmacy, Shanghai Children’s Medical Centre, School of Medicine, Shanghai Jiaotong University, Shanghai, China

    Anle Shen

  4. Health Services Management Department, Guizhou Medical University, Guiyang, China

    Zhihao Yang

  5. School of Public Health, Fudan University, Shanghai, China

    Pei Wang

  6. Clinical Research Unit, Renji Hospital, School of Medicine, Shanghai Jiaotong University, Shanghai, China

    Bin Wu

  7. Saw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore

    Michael Herdman

  8. Saw Swee Hock School of Public Health, National University of Singapore, 12 Science Drive 2, Singapore, Singapore

    Nan Luo

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Contributions

NL, ZY, PW, BW, MH and JB conceived the study, participated in the design, and made substantial contribution to the intellectual content of the manuscript. WZ, AS and NL participated in the acquisition and interpretation of data, performed statistical analyses and writing of the manuscript. The first draft of the manuscript was written by WZ and AS and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript and agreed to be accountable for all aspects of the work.

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Correspondence to Nan Luo.

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This study was reviewed and approved by the Ethics Committee of Shanghai Jiaotong University School of Medicine, Renji Hospital Ethics Committee (Project Identification Code: 2018087). The study protocol followed the tenets of the declaration of Helsinki. The participants were fully informed and informed consent was acquired in writing from all of the participating individuals.

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Zhou, W., Shen, A., Yang, Z. et al. Validity and responsiveness of EQ-5D-Y in children with haematological malignancies and their caregivers. Eur J Health Econ (2024). https://doi.org/10.1007/s10198-024-01669-z

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