5150Children's Hospital, Los Angeles, CA, USA.
University of California, Los Angeles, CA, USA.
J Pediatr Hematol Oncol Nurs. 2022 Nov-Dec;39(6):342-357. doi: 10.1177/27527530221073766. Epub 2022 Jun 8.
Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. RB survivors reported similar HRQOL compared to controls. Physical function (< .001), social support ( = .013), and self-esteem ( = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.
视网膜母细胞瘤 (RB) 是一种在儿童早期诊断出的恶性眼内肿瘤，需要在年幼时进行广泛的医疗和手术治疗。由于视力障碍、面部畸形以及对复发或继发性癌症的恐惧，人们认为其健康相关生活质量 (HRQOL) 会下降。然而，很少有研究确定了与 RB 患者 HRQOL 相关的变量。为了比较 RB 青少年和年轻人 (AYAs) 与匹配对照者的 HRQOL，并确定 RB 幸存者 HRQOL 的预测因素。采用横断面设计，198 名 AYAs（101 名 RB 和 97 名对照者）完成了 HRQOL（PROMIS®-29 概况）和心理社会问卷（Rosenberg 自尊量表、多维感知社会支持量表和 Hollingshead 社会经济地位指数）。临床变量（诊断时的年龄、视力、偏侧性、遗传性、治疗方案和麻醉暴露）从病历中提取。使用线性回归模型估计 HRQOL 的相关性。与对照组相比，RB 幸存者报告的 HRQOL 相似。与对照组相比，RB 组的身体功能（<0.001）、社会支持（=0.013）和自尊（=0.028）较低。视力和自尊占 PROMIS 身体健康综合评分变异的 52%，自尊占心理健康综合评分变异的 38%。尽管 RB 幸存者的身体功能和自尊存在缺陷，但他们的 HRQOL 与健康对照者相当。然而，在这项研究中，大多数 RB 幸存者的视力正常。临床医生应探讨增强 RB 幸存者自尊的方法。
