Level of agreement between adolescents’ self‐assessment and parent proxy report of health‐related quality of life in adolescents with sickle cell disease

Abstract

Background We aim to assess the levels of agreement between parents, as proxies, and Jamaican adolescents living with sickle cell disease (SCD) in the reporting of the adolescent's quality of life. Procedures This cross‐sectional study assessed 102 patient/proxy pairs on quality of life of adolescents with SCD using the PedsQL‐SCD module. The level of agreement among pairs was assessed starting with broad group‐level approaches (the Wilcoxon signed‐rank test augmented by exploring percentage agreement) tapering to individual‐level approaches (intraclass correlation coefficients [ICCs] supplemented with Bland‐Altman plots). Results Most patients (76.5%) had homozygous SS disease (45.1% females; mean age 15.2 ± 1.5 years). Median total pediatric quality of life (PedsQL) scores were 79.1 (adolescent report) and 80.2 (parental report) (P = .60). There were 11.8% underestimation and 12.7% overestimation of overall health‐related quality of life (HRQOL) by parents. The highest perfect agreement existed on the “pain and hurt” domain for both male and female adolescents (85.7% and 84.4%, respectively). Overestimation was highest on the “social communication” domain for both male and female adolescents (19.6% and 34.8%, respectively). Parents exhibited good agreement on total PedsQL scores in male adolescents (ICC = 0.70), but moderate agreement (ICC = 0.43) in female adolescents. Generally, parents underestimated their male child's functioning and overestimated the female child's functioning on the various domains. Conclusions Parents and adolescents exhibit fair agreement in assessment of the adolescent's overall HRQOL but differ on subjective domains. Agreement varies by sex of the affected teen where girls’ HRQOL is generally overestimated by the parental proxy. Interventions to improve parents’ understanding of their children's psychosocial needs are needed.

Health-related quality of life in hemoglobinopathies: A systematic review from a global perspective

“…Jamaican studies regarding parents’ and adolescents’ perception of HRQOL exhibited overall general agreement but differences were observed on subjective domains, as assessed with the PedsQLSCD module. The HRQOL of girls is generally overestimated by the parental proxy ( 40 , 41 ).…”

Risk mitigation behaviors to prevent infection in the mitochondrial disease community during the COVID-19 pandemic

“…Additionally, in order to capture the broad scope of MtD across the lifespan, both pediatric and adult populations were included, which required that our respondents were a mix of patients themselves and caregivers responding on the patient's behalf. This methodology has been used in other diseases where presentation occurs across the age-spectrum, such as sickle cell disease, cerebral palsy, autism and encephalitis [31] , [32] , [33] , [34] , [35] . While the identity of the respondent was controlled for in our model and not found to be a significant predictor of RMBs, it is possible that in a larger or different sample, patients themselves may answer differently than their caregivers [36] .…”

Sex-based differences in the manifestations and complications of sickle cell disease: Report from the Sickle Cell Disease Implementation Consortium

“…For instance, prior studies have associated femininity with engagement in health promotion [47]. Findings from a recent study by Blake et al [48] suggest that health promotion in SCD is linked to gender socialization; as parents or parental proxies of adolescents with SCD tended to underestimate their male adolescents emotional and social functioning, while overestimating for female adolescents. 46 Finally, this study is limited due to the use of a cross-sectional design.…”