6. Life with Vision Loss – RB Canada Research

Treatment & Support: Life with Vision Loss

What is the effect of enucleation and vision loss on retinoblastoma survivors?

The effects of enucleation on retinoblastoma survivors have been studied from two perspectives:

the psychosocial impact on the survivor and their family.
the effect of enucleation of one eye on the development of vision in the remaining eye.

Why Is This One of the Top 10 Retinoblastoma Research Priorities?

Psychosocial and visual development research both provide information on the long-term impact of enucleation on quality of life for retinoblastoma survivors. Psychosocial studies can help to identify pathways for the implementation of effective support mechanisms and aid the identification of individuals at elevated risk of psychosocial difficulties. Visual development research identifies the long-term impact of unilateral enucleation on sight and brain development. As research in this area develops, the new information may inform methods to support optimal visual development in people who experienced unilateral enucleation in infancy.

Personal Story

When an eye has been removed for treatment of retinoblastoma, the brain has an amazing ability to compensate and adapt. Vision with one eye can be just as good as vision with two eyes in many cases but there are some losses such as 3D depth perception. Other senses, such as hearing can adapt and fill in any gaps caused by the loss of an eye. We need to continue to learn how vision loss affects retinoblastoma survivors in order to provide helpful tools for everyday life to allow survivors to thrive just like anybody else.
Professor of Psychology

Progress Towards This priority

Completed Research

Researcher	Title
D. Friedman	Vision-Targeted Health-Related Quality of Life in Adult Survivors of Retinoblastoma
J. Steeves	Early monocular enucleation selectively disrupts neural development of face perception in the occipital face area.
J. Steeves	Altered white matter structure in auditory tracts following early monocular enucleation.
J. Steeves	Evidence of multisensory plasticity: Asymmetrical medial geniculate body in people with one eye.
M. Weintraub	The impact of monocular vision on motor function and quality of life in survivors of retinoblastoma
L. Zhang	Quality of life in children with retinoblastoma after enucleation in China.

Patient Engagement Level For This Priority

Patient Engagement Legend

Limited or Unknown Engagement. For this priority, there is limited or no evidence that patients are meaningfully engaged in research.

Some Engagement. For this priority, there is evidence that patients are meaningfully engaged in some parts of research.

Full Engagement. For this priority, there is evidence that patients are meaningfully engaged in the full spectrum of research.

In order to promote patient engagement in retinoblastoma research, we have provided an estimate of the level of patient engagement for each of the Top 10 Priorities, based on what can be discerned from the published literature. This means we may have missed some research where patients are being meaningfully engaged, because it is not reported. If you think we’ve made an error, please let us know via email.