Study underscores the importance of long-term follow-up in adult retinoblastoma survivors

This cross-sectional study examines the vision-related quality of life (QoL) among adult retinoblastoma survivors.

Study design

Researchers included 470 adult retinoblastoma survivors who were treated at 3 clinics in New York between 1932 and 1994 as part of the Retinoblastoma Survivor Study. Vision-related QoL was assessed using the 25-item National Eye Institute Visual Field Questionnaire (VQF) administered between 2008 and 2010. A score of 100 indicated the highest quality of life.

Outcomes

The study included patients that underwent either unilateral (74.5%) or bilateral (11.5%) enucleation and/or radiotherapy (56.5%). Overall, 61% of participants reported excellent or good eyesight while 16.2% had complete blindness.

The average VFQ composite score was 81.1; scores were unsurprisingly higher for patients with unilateral disease than those with bilateral disease (91.4 vs. 73.2; P<0.001). Previous radiotherapy exposure did not affect the overall VFQ scores, but did affect some aspects of visual function, such as near vision in survivors of bilateral disease and peripheral in survivors of unilateral disease.

Limitations

This study is entirely based on self-reported data and second cancer associations were not reported. Current treatment modalities have also largely changed.

Clinical significance

The health-related quality of life is relatively high in retinoblastoma survivors treated remotely with enucleation and radiotherapy. The findings suggest that quality of life among retinoblastoma survivors could be improved with targeted supportive services and the use of eye and vision-sparing therapies, especially in those with bilateral disease.