Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China

Abstract

Purpose. To assess the quality of life (QoL) and the long-term psychosocial outcomes in adult survivors of unilateral retinoblastoma (RB). Methods. This is a cross-sectional study. Enrolment was offered to all adult survivors of unilateral RB who were treated by enucleation and were followed up in the Ninth People’s Hospital of Shanghai Jiao Tong University School of Medicine; noncancer healthy adults served as a control group. All participants completed a series of questionnaires consisting of two aspects, QoL and psychosocial status. The psychosocial outcomes included anxiety, depression, fear of cancer, and satisfaction with facial appearance. Results. A total of 66 RB survivors (43.0% male) and 66 healthy adults (33.3% male) were aged 27.94 ± 7.63 and 29.18 ± 8.37 at the time of the study, respectively. Adult RB survivors did not have significantly higher rates of depression and anxiety compared with the control group, and they experienced a relatively good QoL. RB survivors were more likely to worry about their facial appearance (median, 1.59 [inter-quartile range, IQR, 1.27 to 2.16] v median, 0.36 [IQR, 0.09 to 1.18]; p<0.001). Radiotherapy was not the factor affecting satisfaction with facial appearance (β, −0.27 [confidence interval, CI, −0.69 to 0.16]; p=0.214). Females were more likely to be influenced by the disease (mean, 29.59 ± 8.89 v mean, 24.37 ± 6.92; p=0.031) and worry about their appearance (mean, 1.88 ± 0.84 v mean, 1.46 ± 0.77; p=0.041). Conclusions. Unilateral RB survivors are a fairly healthy and resilient group. Most unilateral RB survivors experience a relatively good QoL, and they do not have poorer psychosocial functioning compared with a noncancer sample. Females may need more specific psychosocial care.