Interpreting parental proxy reports of (health-related) quality of life for children with unilateral cochlear implants

2007 ◽  
Vol 71 (3) ◽  
pp. 435-445 ◽  
Author(s):  
Tracey H. Sach ◽  
Garry R. Barton
2021 ◽  
Author(s):  
Marizela Kljajic ◽  
Giovanni Maltese ◽  
Peter Tarnow ◽  
Peter Sand ◽  
Lars Kölby

Abstract Background: Assessing health-related quality of life (HRQoL) allows acquisition of the subjective perspective of patients regarding their health and functioning; however, little is known about the experiences of patients living with treated craniosynostosis (CS). Methods: School-aged children (7–16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales via both self- and proxy reports.Results: Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated HRQoL as high, with no difference in HRQoL found between treated sagittal (SS) or metopic (MS) synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ) and adaptive behavior skills (ABAS). Furthermore, we observed differences in estimated HRQoL between self- and proxy reports (i.e., parents estimated child HRQoL as higher than did the children). Conclusions: Children treated for CS have a generally high HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. We found that HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.


2019 ◽  
Vol 40 (3) ◽  
pp. 592-604 ◽  
Author(s):  
Michael F. Hoffman ◽  
Ivette Cejas ◽  
Alexandra L. Quittner

Heliyon ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e03114
Author(s):  
Olga María Alegre-de la Rosa ◽  
Luis Miguel Villar-Angulo

2021 ◽  
Author(s):  
Mei Neni Sitaresmi ◽  
Braghmandita Widya Indraswari ◽  
Nisrina Maulida Rozanti ◽  
Zena Sabilatuttaqiyya ◽  
Abdul Wahab

Abstract Background: Assessing health-related quality of life (HRQOL) and its determinants in children may provide a comprehensive view of child health. The study aimed to assess the HRQOL in Indonesian children and its determinants.Methods: We conducted a community-based cross-sectional study in the Sleman District of Yogyakarta Special Province, Indonesia, from August to November 2019. We recruited children aged 2 to 18 years old using the Sleman Health and Demography Surveillance System sample frame. We used the validated Indonesian version of Pediatric Quality of life InventoryTM (Peds QLTM) 4.0 Generic core scale, proxy-reports, and self-reports, to assess the HRQOL. Results: We recruited 633 proxies and 531 children aged 2-18 years. The mean total score of self-report and proxy-report were 89.9+ 8.5 and 93.3+6.4. There was a fair to moderate correlation between self-reports and proxy reports, with interclass correlation ranging from 0.34 to 0.47, all p<0.001. Half of the children (49.4% from proxy-report and 50.1% from self-report) reported having acute illness during the last month. Based on proxy-reports, multivariate regression analysis demonstrated lower HRQOL for children with acute health problems, younger age, history of low birth weight, abnormal delivery, lower fathers' educational level, and government-paid insurance for low-income families.Conclusion: In addition to sociodemographic determinants of a child's HRQOL, children’s health condition influences HRQOL in the general pediatric population. In low- and middle-income countries where acute infections and low birth weight are still prevalent, its prevention and appropriate interventions should improve child health.


2019 ◽  
Vol 40 (3) ◽  
pp. 605-614 ◽  
Author(s):  
Yawen Zhao ◽  
Ying Li ◽  
Zhipeng Zheng ◽  
Jing Li ◽  
Xiaolu Nie ◽  
...  

2019 ◽  
Vol 29 (4) ◽  
pp. 901-912 ◽  
Author(s):  
Niki Rensen ◽  
Lindsay M. H. Steur ◽  
Sasja A. Schepers ◽  
Johannes H. M. Merks ◽  
Annette C. Moll ◽  
...  

Abstract Purpose Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers’ reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress). Methods Both parents completed the PedsQL generic (child’s HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland–Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis. Results Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65–0.83). Bland–Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL. Conclusions If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent’s sex is not of major importance, but clinicians should be aware of patient’s and family’s characteristics.


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