Retinoblastoma is an ocular cancer with an excellent survival rate. However, little is known about the quality of life of survivors, particularly with regards to cognitive functioning. We recently published an investigation of the cognitive and adaptive functioning of 94 patients who were assessed multiple times from diagnosis through age five. Analyses revealed that, contrary to expectations, there was a decline in functioning over time, with global functioning in the low average range at age 5. Declines were particularly apparent in children treated with surgery (enucleation) only. This was surprising as prior research, though limited, suggested functioning in the average to above average range. Thus, we now propose to complete a follow-up assessment with these children at age 10 to gain an appreciation of their long-term outcomes.
Specific Aims : To evaluate the cognitive and psychosocial functioning of children with retinoblastoma at approximately 10 years of age and in relation to developmental functioning previously assessed. To assess the impact of parent and family factors (mood, perceptions of child vulnerability, family environment) on cognitive and psychosocial functioning in children with retinoblastoma. Hypotheses: Cognitive functioning will be below normative means, but stable in comparison to global functioning at age 5. Cognitive functioning of all survivors, regardless of treatment modality, will be commensurate. A significant subset of patients will demonstrate impairments in psychosocial functioning. Psychosocial functioning will be associated with neurocognitive functioning. Parent and family factors will be associated with cognitive and psychosocial functioning in children with retinoblastoma. Design: Patients enrolled on St. Jude Children's Research Hospital institutional protocol RET5 will be approached at age 10 (1 year) to complete a battery of cognitive, academic, and psychosocial assessments. Measures include objective assessments of cognitive, academic, and executive functioning, as well as parent-, teacher- and self-report questionnaires of emotional, behavioral, and adaptive functioning. Additional measures will assess parent and family factors (mood, family environment, perceptions of child vulnerability) that may influence psychosocial functioning. Analyses will seek to both extend the longitudinal trajectory of cognitive and adaptive functioning post-diagnosis for retinoblastoma by using data collected as part of the earlier study, as well as to describe the current cognitive and psychosocial functioning of school-aged survivors of retinoblastoma.
Little is known about the cognitive and psychosocial functioning of children with retinoblastoma; however declines in cognitive and adaptive functioning were recently demonstrated via serial assessments completed with a homogenous group of patients between diagnosis and age 5. Critical questions remain regarding the long-term cognitive and psychosocial functioning of children with retinoblastoma. Answering these questions will directly impact clinical care by informing the development of interventions.
