title: Validation of the Chinese version of the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (the CHO-KLAT).
abstract: It is important to assess the health-related quality of life outcomes of boys in China, but there are no tools validated for this purpose. The objective of the study was to assess the validity of the Simplified Chinese version of the CHO-KLAT2.0 . We recruited 60 boys with either haemophilia A (HA) or haemophilia B (HB) and their parents from four regions in China, and assessed the validity of CHO-KLAT compared to the PedsQL. All participants complete the CHO-KLAT a second time 1-2 weeks later to assess reliability. The boys ranged in age from 7 to 18 (mean = 12.4; SD = 3.03) years. The severity distribution was: mild (9), moderate (10) and severe (41). On-demand therapy was received by 26 boys, while 18 received low-dose prophylaxis (HA: 10 IU kg(-1) 2-3 times/week(-1) , and HB: 20 IU kg(-1) 1 time/week(-1) ). The mean CHO-KLAT scores were 63.7 (SD = 10.6) for child-report and 58.3 (SD = 11.4) for parent-report. Validity was supported by a correlation of 0.67 (P < 0.0001) with the PedsQL for child-report and 0.64 (P < 0.0001) for parent-report. The test-retest reliability was 0.88 (95% CI: 0.82-0.94) for child-report, and 0.90 (95% CI: 0.86-0.95) for parent-report. Inter-rater reliability was 0.46 (95% CI: 0.26-0.66). CHO-KLAT scores were 11 points higher among patients who had been on prophylaxis 3 times per week for ≥24 weeks. These results confirm the reliability and validity of the Chinese version of the CHO-KLAT. This measure is suitable for use in prospective clinical trials in boys with haemophilia in China.
authors.affiliation: Department of Haematology/Oncology, Beijing Children's Hospital and Capital Medical University, Beijing, China.
authors.forename: R
authors.initials: R
authors.lastname: Wu
authors.forename: J
authors.initials: J
authors.lastname: Zhang
authors.forename: J
authors.initials: J
authors.lastname: Sun
authors.forename: M
authors.initials: M
authors.lastname: Zhou
authors.forename: J S
authors.initials: JS
authors.lastname: Wu
authors.forename: N
authors.initials: N
authors.lastname: Li
authors.forename: X
authors.initials: X
authors.lastname: Li
authors.forename: K H
authors.initials: KH
authors.lastname: Luke
authors.forename: M-C
authors.initials: MC
authors.lastname: Poon
authors.forename: V S
authors.initials: VS
authors.lastname: Blanchette
authors.forename: N L
authors.initials: NL
authors.lastname: Young
mesh_terms: D000293:Adolescent; D002648:Child; D002681:China; D005260:Female; D006467:Hemophilia A / Q000175:diagnosis / Q000188:drug therapy / Q000453:epidemiology*; D002836:Hemophilia B / Q000175:diagnosis / Q000188:drug therapy / Q000453:epidemiology*; D006801:Humans; D008297:Male; D062486:Public Health Surveillance; D011788:Quality of Life; D015203:Reproducibility of Results; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
keywords: haemophilia; outcome measurement; paediatrics; quality of life