Measuring health-related quality of life in children with cancer living in mainland China: feasibility, reliability and validity of the Chinese mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module

Abstract

BackgroundThe Pediatric Quality of Life Inventory (PedsQL) is widely used instrument to measure pediatric health-related quality of life (HRQOL) for children aged 2 to 18 years. The purpose of the current study was to investigate the feasibility, reliability and validity of the Chinese mandarin version of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in a group of Chinese children with cancer.MethodsThe PedsQL 4.0 Genetic Core Scales and the PedsQL 3.0 Cancer Module were administered to children with cancer (aged 5-18 years) and parents of such children (aged 2-18 years). For comparison, a survey on a demographically group-matched sample of the general population with children (aged 5-18) and parents of children (aged 2-18 years) was conducted with the PedsQL 4.0 Genetic Core Scales.ResultThe minimal mean percentage of missing item responses (except the School Functioning scale) supported the feasibility of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module for Chinese children with cancer. Most of the scales showed satisfactory reliability with Cronbach's α of exceeding 0.70, and all scales demonstrated sufficient test-retest reliability. Assessing the clinical validity of the questionnaires, statistically significant difference was found between healthy children and children with cancer, and between children on-treatment versus off-treatment ≥12 months. Positive significant correlations were observed between the scores of the PedsQL 4.0 Generic Core Scale and the PedsQL 3.0 Cancer Module. Exploratory factor analysis demonstrated sufficient factorial validity. Moderate to good agreement was found between child self- and parent proxy-reports.ConclusionThe findings support the feasibility, reliability and validity of the Chinese Mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in children with cancer living in mainland China.

Quality of life of children and adolescents with cancer: revision of studies literature that used the Pediatric Quality of Life InventoryTM

“…23 Nevertheless, the QoL had statistically meaningful differences in the variants, age of the child diagnosis, 9,11 guardian age 9 , child and adolescent without treatment. ≤12 months and >12 months, [4][5][6]21, cancer diagnosis and epilepsy, 3 for nutrition condition, 18 death in less than six months and over six months after interview. 25 The studies that collected the reports of children and adolescents reinforce the importance of giving voice to children and adolescents, and knowing what they think of the illness and the treatment 26 and it is suggested as a limitation having used just the parents´s reports.…”

“…Total sample scores by dimensions were described in 8 article, [3][4][5]9,20,22 and the authors study of the QoL of children and adolescents with cerebral tumors treated with radiotherapy (RDT) 20 , displayed the results of 3 dimensions (Table 2). In these articles, there were no values of dimensions scores less than 68 and superior to 94.…”

“…3,5,7,11,20 Concerning the parents´s reports, it is observed in Table 3 the general score of QoL described in 6 articles, 2,3,5,7,19 with variants among 42.01±13.17 to 80.4±13.7. The score by dimensions is displayed in 7 articles, [3][4][5]7,9,11,20 the least average value was found in dimensions treatment anxiety 60.1 in the assessment of QoL of 95 children and adolescents in the age group from 2 to 16 years old, diagnosed with acute lynfoyd leukemia 7 and the largest one 90,9 in validity study of PedsQL TM with 413 parents of children and adolescents in the Chinese version with 413 parents of children and adolescents in the age group from 1 to 18 years old. 5 As to the groups description, 11 articles 6,8,15,16,18,21,23 described the values by dimensions, however they just displayed values according to groups (Tables 2, 3); it was noted that 3 articles 6,16,23 described by group both for the reports of parents, children and adolescents.…”

“…The comparison group by type of report was used by 11 articles, [2][3][4][5][6][7]9,19,23,26 but they have used for gender/sex, 8,15,18 being or not receiving treatment, 5,6,11,21 the age group 9,15,21,22 and other groups, according to Table 4.…”

“…It´s a matter of an instrument already validated and adapted across cultures, and it also verifies the psichometric proprieties in several languages. [2][3][4][5][6][7][8][9][10][11] It is a multidimensional instrument comprised by 27 items distributed in eight dimensions: pain and hurt (2 items), nausea (5 items), treatment anxiety (3 items) procedure anxiety (3 items), worry (3 items), cognitive problem (5 items), perception physical appearance (3 items), and communication (3 items). It presents two versions, one for the child or the adolescente reports divided by age group 5-7, 8-12, and 13-18 years old and an other for the parent reports from 2-4, 5-7, 8-12, and 13-18 years old.…”