Optometry and Vision Sciences, School of Medical Sciences, Hyderabad, Telangana, India.
Department of Optometry, University Institute of Allied Health Sciences, Chandigarh University, Punjab, India.
Indian J Ophthalmol. 2024 Oct 1;72(10):1433-1441. doi: 10.4103/IJO.IJO_2857_23. Epub 2024 Sep 27.
With the increased survival of retinoblastoma (RB) patients, it is important to evaluate the quality of life (QoL) of RB survivors as well as caregivers to provide comprehensive care to the children and caregivers. This study aims to assess the QoL of survivors of RB, as perceived by parents and the self-report by patients, through a pediatric QoL (PEDs-QoL) questionnaire.
The study cohort included 86 RB survivors, 86 age-matched controls, and their primary carers. PedsQL 4.0 generic core scale and structured interview were administered. QoL in physical, social, emotional, and school health was evaluated and correlated with clinical and sociodemographic parameters.
The mean age of the RB survivors was 5.7 years with an M:F ratio of 1.1:1. Disease was bilateral in 79% of cases. About 45% (39/86) underwent enucleation, while others received combination therapy (16; 18%), chemotherapy (30; 34%), and radiation (1; 1%). As reported by parents, the QoL of physical health domain of RB survivors was 70.2 SD ± 27.8 and 96.15 ± 13 SD, emotional health was 72.1 ± 27.4 SD and 94.4 ± 12.5 SD, social health was 80.4 ± 24.9 SD and 98.6 ± 6.2 SD; and school health was 71.9 ± 2 6.5 SD and 96.1 ± 12.2 SD. As per the self-report perception, the QoL of physical health was 68.2 ± 27.8 SD and 96.2 ± 13 SD, emotional health was 66.2 ± 28.4 SD and 95.3 ± 12.5 SD, social health was 69.5 ± 24.9 SD and 98.7 ± 6.2 SD, and school health was 63.5 ± 26.5 SD and 95.1 ± 12.2 SD. There was a significant relationship between enucleation and QoL domains, where χ2 = 67.75, degrees of freedom (df) = 36, and P < 0.01. There was a significant association between vision in the better eye (6/18 or better = 8, 6/18-6/60 = 8, 3/60 or worse = 42) and QoL scores (χ2 = 95.36, df = 62, P < 0.01). There was a substantial association between socioeconomic status and QoL domains, where χ2= 88.5, df = 56, P < 0.01.
The results of the study showed that the QoL of parents of RB survivors and self-proxy reports were negatively affected in many ways, including physical, social, emotional, and school-related dimensions. Despite the small differences, self-proxy reports indicated a lower QoL than the parents' group. The study findings indicate that there are notable correlations between enucleation and visual acuity less than 6/18, as well as socioeconomic status, with various aspects of QoL domains among individuals who have survived RB.
随着视网膜母细胞瘤（RB）患者生存率的提高，评估 RB 幸存者及其照顾者的生活质量（QoL）变得尤为重要，以便为儿童和照顾者提供全面的护理。本研究旨在通过儿科生活质量（PEDs-QoL）问卷评估 RB 幸存者的父母感知和患者自我报告的 QoL。
研究队列包括 86 名 RB 幸存者、86 名年龄匹配的对照者及其主要照顾者。采用 PedsQL 4.0 通用核心量表和结构访谈进行评估。评估身体、社交、情感和学校健康方面的 QoL，并与临床和社会人口统计学参数相关联。
RB 幸存者的平均年龄为 5.7 岁，男女比例为 1.1:1。79%的病例为双侧疾病。约 45%（39/86）接受了眼球摘除术，而其他患者接受了联合治疗（16；18%）、化疗（30；34%）和放疗（1；1%）。根据父母报告，RB 幸存者的身体、情感、社会和学校健康领域的 QoL 分别为 70.2±27.8 和 96.15±13 SD、72.1±27.4 和 94.4±12.5 SD、80.4±24.9 和 98.6±6.2 SD；和 71.9±26.5 和 96.1±12.2 SD。根据自我报告感知，身体、情感、社会和学校健康领域的 QoL 分别为 68.2±27.8 和 96.2±13 SD、66.2±28.4 和 95.3±12.5 SD、69.5±24.9 和 98.7±6.2 SD，和 63.5±26.5 和 95.1±12.2 SD。眼球摘除术与 QoL 各领域之间存在显著关系，χ2=67.75，自由度（df）=36，P<0.01。更好眼视力（6/18 或更好=8，6/18-6/60=8，3/60 或更差=42）与 QoL 评分之间存在显著关联（χ2=95.36，df=62，P<0.01）。社会经济地位与 QoL 各领域之间存在显著关联，χ2=88.5，df=56，P<0.01。
研究结果表明，RB 幸存者父母和自我报告的 QoL 在许多方面受到负面影响，包括身体、社交、情感和与学校相关的维度。尽管存在微小差异，但自我报告表明 QoL 低于父母组。研究结果表明，在 RB 幸存者中，眼球摘除术和视力低于 6/18 以及社会经济地位与身体、情感、社会和学校健康等 QoL 各领域之间存在显著相关性。
