Abstract

This study aimed to explore the health-related quality of life (HRQoL) and associated variables in children with chronic myeloid leukemia in the chronic phase (CML-CP) receiving tyrosine kinase inhibitors (TKIs). A cross-sectional questionnaire was given to children with CML and their parents, who were < 18years at diagnosis of CML and < 19years at study. The questionnaire comprised three parts, including demographic information, clinical information, and the Chinese version of Pediatric Quality of Life Inventory™ (PedsQL™) Cancer Module 3.0 as HRQoL questionnaire. A total of 240 respondents data were analyzed. Multivariate analysis showed that children with symptoms had worse pain (- 10.2; P < 0.001), nausea (- 17.3; P = 0.001), more treatment anxiety (- 7.2; P = 0.005), worse self-assessment appearance (- 7.1; P = 0.001), communication problems (- 6.4; P = 0.001), and worse HRQoL (- 7.0; P < 0.001). Children with mothers having low educational qualifications had worse pain (- 6.0; P = 0.014), more worried about future (- 5.4; P = 0.042), worse cognition problems (- 7.1; P = 0.002), worse communication problems (- 5.5; P = 0.008), and worse HRQoL (- 4.3; P = 0.005). Younger age children at study had more procedural anxiety (2.7; P = 0.001), treatment anxiety (- 1.7; P = 0.014) and cognition problem (3.6; P < 0.001), as well as worse HRQoL (1.8; P = 0.008). However, older age children at diagnosis were more worried about future (- 2.8; P = 0.001), worse self-assessment appearance (- 1.1; P = 0.042) and worse HRQoL (- 1.8; P = 0.007). Other variables significantly associated with worse HRQoL included female gender, rural household registration and their father's low education level. Parents reported more gastrointestinal disorders, were worried about the future and had less concern about appearance than their children. Female gender, older age at diagnosis, younger age at study, lower mother's education level, and TKI-related symptoms are significantly associated with worse HRQoL in Children with CML. Children and their parents have different priorities in the HRQoL.

Highlights

  • Chronic myeloid leukemia (CML) is rare in children contributing only 2–3% of all pediatric leukemia cases

  • Multivariate analysis showed that children with symptoms had worse pain (-10.7; P

  • Other variables significantly associated with worse HRQoL included female sex and rural household registration

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Summary

Introduction

Chronic myeloid leukemia (CML) is rare in children contributing only 2–3% of all pediatric leukemia cases. Tyrosine kinase inhibitors (TKIs) have transformed the therapy of CML, and children with CML have a life expectancy similar to the healthy population[1, 2]. In addition to leukemia-control, a key goal of therapy is to improve children’s health-related quality of life (HRQoL)[3]. Children with CML in the chronic phase (CML-CP) mainly receive long-term oral TKIs as outpatients, enabling them to participate normally in family and school life, so their HRQoL and the associated variables may be different. The variables associated with HRQoL in adults may be different from CML in children. A cross-sectional study was designed to assess HRQoL in children with CML receiving TKI-therapy and explore its associated variables

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