The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  

Background: When measuring young Duchenne Muscular Dystrophy (DMD) patients’ health-related quality of life (HRQoL), parent-proxy reports are heavily relied on. Therefore, it is imperative that the relationship between parent-proxy and child self-report HRQoL is understood. This study examined the level of agreement between children and their parent-proxy rating of the child’s HRQoL. Methods: We used FOR-DMD clinical trial baseline data. HRQoL, measured using the PedsQL inventory, was reported by 178 parent and child (ages 4 to 7 years) dyads. Intracorrelation coefficients (ICC) measured absolute agreement while paired t-tests determined differences in the average HRQoL ratings between groups. Results: The level of agreement between child and parent-proxy ratings of HRQoL was poor for the generic PedsQL scale (ICC: 0.29) and its subscales; and, similarly low for the neuromuscular disease module (ICC:0.16). On average, parents rated their child’s HRQoL as poorer than the children rated themselves in all scales except for psychosocial and school functioning. Conclusions: Child and parent-proxy HRQoL ratings are discordant in this study sample, as occurs in other chronic pediatric diseases. This should be taken into account when interpreting clinical and research HRQoL findings in this population. Future studies should examine reasons for parents’ perception of poorer HRQoL than that reported by their children.


2013 ◽  
Vol 22 (4) ◽  
pp. 248-253 ◽  
Author(s):  
Alison R. Snyder Valier ◽  
Elizabeth M. Swank ◽  
Kenneth C. Lam ◽  
Matthew L. Hansen ◽  
Tamara C. Valovich McLeod

Context:Accurate assessment of health-related quality of life (HRQoL) is important for quality patient care. Evaluation of HRQoL typically occurs with patient self-report, but some instruments, such as the Pediatric Quality of Life Inventory (PedsQL), allow for proxy reporting. Limited information exists comparing patient and proxy reports of HRQoL after sport-related injury in adolescent athletes.Objective:To compare patient ratings and parent-proxy ratings of HRQoL in adolescent athletes who suffer musculoskeletal injuries requiring orthopedic consultation. The authors hypothesized poor agreement between patient and parent-proxy ratings of HRQoL.Design:Cross-sectional study.Setting:Orthopedic practice.Patients:Thirteen adolescent patients with a sport-related musculoskeletal injury requiring orthopedic consultation and 1 of their parents participated.Interventions:During the initial visit to the physician’s office, each patient was asked to complete the PedsQL, and the patient’s parent was asked to complete the parent-proxy version of the PedsQL.Main Outcome Measurements:The PedsQL is a pediatric generic outcome measure that consists of a total score and 4 subscale scores: physical, emotional, social, and school functioning. Means and standard deviations were calculated for all scores, and comparisons between patient-self report and parent-proxy ratings of HRQoL were made for the PedsQL total score and subscale scores using Pearson product–moment correlations (r).Results:Pearson product–moment correlations showed little to fair insignificant relationships between patient self-report and parent-proxy report of the PedsQL for the total score (r = −.1) and all subscales (range r = .1 to .4).Conclusions:Our results suggest a lack of agreement between patient and parent-proxy ratings of HRQoL, with patients rating their HRQoL lower than their parent. Patient perception of HRQoL may be more accurate than proxy report, which supports the use of patient-rated HRQoL in patient evaluation. Assessments of HRQoL made by proxies, even those close to the patient, may not represent patient health status.


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