School of Occupational Therapy, Hadassah-Hebrew University School of Medicine, Jerusalem, Israel.
Pediatr Blood Cancer. 2011 Apr;56(4):590-4. doi: 10.1002/pbc.22790. Epub 2010 Dec 22.
To assess the participation and health-related quality of life (HRQOL) of survivors of childhood retinoblastoma (RB).
Parents of 46 survivors of childhood RB between the ages of 2-18 were administered questionnaires relating to their children's participation (CFFS) and HRQOL (CHQ and PedsQL) and children were administered the PedsQL. Results of the HRQOL were compared to population-based norms.
The overall QOL of survivors of RB was similar to that of age norms. However, parents' rating of their children's general and emotional health was lower than that of age norms, and survivors reported lower QOL related to school. Survivors of bilateral RB participated less in daily activities and had lower emotional QOL compared to those with unilateral RB, and parents of children who had an eye enucleated reported that their children had lower self-esteem. The level of participation was related to the perceived QOL.
Our results indicate that children who are survivors of RB have an overall QOL that is similar to their age-peers. However, subgroups of survivors appear to have unique difficulties that require continued follow-up and intervention. Focus should be placed on their participation in daily activities both in the community and at school.
评估儿童视网膜母细胞瘤（RB）幸存者的参与度和健康相关生活质量（HRQOL）。
对 46 名年龄在 2-18 岁之间的儿童 RB 幸存者的父母进行了与儿童参与度（CFFS）和 HRQOL（CHQ 和 PedsQL）相关的问卷调查，同时对儿童进行了 PedsQL 问卷调查。将 HRQOL 的结果与基于人群的标准进行了比较。
RB 幸存者的总体生活质量与年龄标准相似。然而，父母对其子女一般和情感健康的评分低于年龄标准，且幸存者报告在与学校相关的方面生活质量较低。双侧 RB 幸存者的日常活动参与度低于单侧 RB 幸存者，且情绪健康质量较低，眼球摘除儿童的父母报告其子女自尊心较低。参与度的高低与感知到的生活质量有关。
我们的研究结果表明，RB 幸存者的儿童整体生活质量与同龄人相似。然而，某些亚组的幸存者似乎存在独特的困难，需要持续随访和干预。应关注他们在社区和学校中日常活动的参与度。
