Memorial Sloan Kettering Cancer Center, New York, NY.
Weill Cornell Medical College, New York, NY.
Palliat Support Care. 2020 Jun;18(3):322-331. doi: 10.1017/S1478951519000920.
Retinoblastoma is the most common primary intraocular tumor of childhood with >95% survival rates in the US. Traditional therapy for retinoblastoma often included enucleation (removal of the eye). While much is known about the visual, physical, and cognitive ramifications of enucleation, data are lacking about survivors' perception of how this treatment impacts overall quality of life.
Qualitative analysis of an open-ended response describing how much the removal of an eye had affected retinoblastoma survivors' lives and in what ways in free text, narrative form.
Four hundred and four retinoblastoma survivors who had undergone enucleation (bilateral disease = 214; 52% female; mean age = 44, SD = 11) completed the survey. Survivors reported physical problems (n = 205, 50.7%), intrapersonal problems (n = 77, 19.1%), social and relational problems (n = 98, 24.3%), and affective problems (n = 34, 8.4%) at a mean of 42 years after diagnosis. Three key themes emerged from survivors' responses; specifically, they (1) continue to report physical and intrapersonal struggles with appearance and related self-consciousness due to appearance; (2) have multiple social and relational problems, with teasing and bullying being prominent problems; and (3) reported utilization of active coping strategies, including developing more acceptance and learning compensatory skills around activities of daily living.
This study suggests that adult retinoblastoma survivors treated with enucleation continue to struggle with a unique set of psychosocial problems. Future interventions can be designed to teach survivors more active coping skills (e.g., for appearance-related issues, vision-related issues, and teasing/bullying) to optimize survivors' long-term quality of life.
视网膜母细胞瘤是儿童期最常见的眼内原发性肿瘤，在美国的存活率超过 95%。传统的视网膜母细胞瘤治疗方法通常包括眼球摘除（摘除眼睛）。虽然人们对眼球摘除的视觉、身体和认知后果了解很多，但缺乏关于幸存者对这种治疗如何影响整体生活质量的看法的数据。
对开放性回答进行定性分析，以了解眼球摘除对视网膜母细胞瘤幸存者生活的影响程度以及以何种方式影响，以自由文本、叙述形式呈现。
404 名接受过眼球摘除术的视网膜母细胞瘤幸存者（双侧疾病=214 例；女性占 52%；平均年龄=44 岁，标准差=11 岁）完成了这项调查。幸存者报告了身体问题（n=205，50.7%）、个人问题（n=77，19.1%）、社会和人际关系问题（n=98，24.3%）和情感问题（n=34，8.4%），平均在诊断后 42 年。幸存者的回答中出现了三个关键主题；具体来说，他们（1）由于外观继续报告身体和个人在外观和相关自我意识方面的挣扎；（2）存在多种社会和人际关系问题，其中戏弄和欺凌是突出的问题；（3）报告了积极应对策略的利用，包括发展更多的接受能力，并学习日常生活活动的补偿技能。
这项研究表明，接受眼球摘除术治疗的成年视网膜母细胞瘤幸存者仍在与一系列独特的社会心理问题作斗争。未来的干预措施可以设计为教授幸存者更多的积极应对技能（例如，针对与外观相关的问题、与视力相关的问题和戏弄/欺凌），以优化幸存者的长期生活质量。
