scholarly journals Problem-Solving Skills Training for Vulnerable Families of Children with Persistent Asthma: Report of a Randomized Trial on Health-Related Quality of Life Outcomes

2010 ◽  
Vol 35 (10) ◽  
pp. 1133-1143 ◽  
Author(s):  
Michael Seid ◽  
James W. Varni ◽  
Pradeep Gidwani ◽  
Leticia Reyes Gelhard ◽  
Donald J. Slymen
Keyword(s):  
Quality Of Life ◽  
Problem Solving ◽  
Persistent Asthma ◽  
Skills Training ◽  
Health Related Quality ◽  
Vulnerable Families ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Abstract Objectives To test the efficacy of problem-solving skill training (PST) in improving health-related quality of life (HRQOL) of children with persistent asthma from predominantly lower socioeconomic status (SES) Spanish-speaking Hispanic families. Methods Randomized controlled trial comparing standard care waitlist (SC) control, home-visiting asthma education/care coordination (CC), and combined intervention (CC + PST) at baseline, after intervention, and 6-month follow-up. The primary outcome was parent proxy-report child HRQOL (PedsQL). Results Participants (n = 252) were 83.3% Hispanic and 56.3% monolingual Spanish speakers, and 72.6% of mothers had not graduated high school. We found a significant (P = 0.05) intervention effect for parent proxy-reported child generic (but not asthma-specific) HRQOL, with CC + PST superior to SC [83.8 vs 79.8; adjusted mean difference of 4.05 points (95% confidence interval 0.63–7.4], but no difference between the CC and SC groups. Conclusions In this sample of vulnerable families of children with persistent asthma, a CC + PST intervention was efficacious in improving children’s generic HRQOL.

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 ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

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.

scholarly journals P.072 Agreement between children and their parents’ ratings of the health-related quality of life of children with Duchenne Muscular Dystrophy

2018 ◽  
Vol 45 (s2) ◽  
pp. S35-S35
Author(s):  
S Brar ◽  
C Campbell ◽  
E McColl ◽  
W Martens ◽  
M McDermott ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Self Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy ◽  
Level Of Agreement

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.

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