Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Department of Global Pediatric Medicine and Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Pediatr Blood Cancer. 2023 Feb;70(2):e29983. doi: 10.1002/pbc.29983. Epub 2022 Nov 17.
Retinoblastoma is the most common intraocular childhood cancer and is typically diagnosed in young children. With increasing number of survivors and improved medical outcomes, long-term psychosocial impacts need to be explored. Thus, the current study sought to assess functioning in school-aged survivors of retinoblastoma.
Sixty-nine survivors of retinoblastoma underwent a one-time evaluation of psychosocial functioning. Survivors (M = 10.89 years, SD = 1.07 years; 49.3% male; 56.5% unilateral disease) and parents completed measures of quality of life (QoL; PedsQL) and emotional, behavioral, and social functioning (PROMIS [patient-reported outcome measurement information system] Pediatric Profile, BASC-2 parent report). Demographic and medical variables were also obtained.
On the whole, both survivors and caregivers indicated QoL and behavioral and emotional health within the typical range of functioning. Survivors reported better physical QoL compared to both parent report and a national healthy comparison sample, whereas caregivers reported that survivors experienced lower social, school, and physical QoL than a healthy comparison. Regarding behavioral and emotional health, survivors indicated more anxiety than a nationally representative sample. Parents of female survivors endorsed lower adaptive scores than parents of male survivors.
Results indicated that survivors of retinoblastoma reported QoL and behavioral and emotional health within normal limits, although parents appear to perceive greater impairment across several assessed domains. Understanding both survivor and parent reports remains important for this population. Future research should explore psychosocial functioning of these survivors as they transition to adolescence and early adulthood, given the increased independence and behavioral and emotional concerns during these developmental periods.
视网膜母细胞瘤是最常见的儿童眼内恶性肿瘤，通常在幼儿中诊断出来。随着幸存者人数的增加和医疗效果的改善，需要探讨其长期的心理社会影响。因此，本研究旨在评估视网膜母细胞瘤学龄期幸存者的功能。
69 名视网膜母细胞瘤幸存者接受了一次心理社会功能评估。幸存者（M=10.89 岁，SD=1.07 岁；49.3%为男性；56.5%为单侧疾病）和家长完成了生活质量（PedsQL）和情绪、行为和社会功能（PROMIS[患者报告结果测量信息系统]儿科概况、BASC-2 家长报告）的测量。还获得了人口统计学和医学变量。
总的来说，幸存者和照顾者都报告了生活质量以及行为和情绪健康处于典型功能范围内。与家长报告和全国健康对照样本相比，幸存者报告的身体生活质量更好，而照顾者报告幸存者的社会、学校和身体生活质量低于健康对照。关于行为和情绪健康，幸存者报告的焦虑程度高于全国代表性样本。女性幸存者的父母比男性幸存者的父母的适应能力得分更低。
结果表明，视网膜母细胞瘤幸存者报告的生活质量和行为及情绪健康处于正常范围内，但父母似乎认为在几个评估领域存在更大的障碍。了解幸存者和家长的报告对于这一人群仍然很重要。未来的研究应该探讨这些幸存者在过渡到青少年和成年早期时的心理社会功能，因为在这些发展阶段，他们的独立性增加，行为和情绪问题也会增加。
