Vision-related quality of life compared to generic measures in retinoblastoma survivors

Abstract

Purpose To (1) Compare vision-related quality of life (VRQOL) in adolescent and young adult (AYA) unilateral versus bilateral retinoblastoma (RB) survivors using a vision-targeted measure and a generic health-related quality of life (HRQOL) measure and (2) Assess associations among VRQOL and generic HRQOL domains and overall QOL and estimate associations of the VRQOL and HRQOL domains with overall QOL. Methods The National Institute for Health (NIH) Toolbox® VRQOL instrument, PROMIS®-29 Profile v 2.1, and a single-item QOL measure were administered in a cross-sectional study of 101 RB survivors. Reliability for multi-item scales was estimated. Product-moment and Spearman rank correlation coefficients and stepwise ordinary least squares were used to measure associations of other variables with overall QOL. Results Significantly worse VRQOL was reported by bilateral than unilateral RB survivors. Cronbach’s alpha coefficients for all VRQOL scales ranged from 0.83 to 0.95. Medium to large correlations were found between all NIH Toolbox® VRQOL scales and the PROMIS®-29 measures. Depression and ability to participate in social roles and activities from the PROMIS®-29 Profile accounted for 38% of the variance in overall QOL with the psychosocial domain of the NIH Toolbox® VRQOL explaining 16% of the variance. Conclusion VRQOL is impaired in bilateral RB survivors. VRQOL is associated substantially with the PROMIS-29 generic HRQOL measure but has significant unique associations with overall QOL. The NIH Toolbox® VRQOL measure provides important information about the vision-related effects on daily life of AYA RB survivors.

Assessing quality of life in childhood cancer survivors at risk for hearing loss: a comparison of HEAR-QL and PROMIS measures

“…Although CCS with retinoblastoma are at risk for hearing loss, no participants with retinoblastoma had hearing loss in this cohort. Specific data relating to vision and/or visual deficits was not analyzed in this study, however, it is reasonable to assume that a decrease in a participant's vision could also have an impact on quality of life, which has been reported (32)(33)(34). This project did not detect any difference in QOL based on diagnosis, however, in CCS with hearing and vision impairment, the combined sensory deficits may have an even greater impact on QOL.…”