Health Systems: Follow Up & Follow Through
What is the optimal follow-up (including ophthalmological and oncological) for heritable retinoblastoma patients and survivors (by diagnosis and treatment) and how can we ensure this is provided to all?
Approximately 45% of retinoblastoma patients have the heritable form, which confers the following risks:
- Recurrence of retinoblastoma in childhood
- Increased risk of second cancers later in life
- Passing on the RB1 mutation to offspring
- Long-term side effects of treatment
Why Is This One of the Top 10 Retinoblastoma Research Priorities?
Despite aforementioned risks, a standard plan for adult follow-up of heritable retinoblastoma survivors does not exist. Regular examinations could potentially detect new cancers or uncover long-term side effects of early treatment. However, without research, we don’t know what schedule of examinations, or even what type of examinations, should be recommended. Further research into ophthalmological and oncological follow-up will help us develop of a standard plan that will improve adult survivorship and quality of life.
Personal Story
Retinoblastoma survivors and families are fortunate to have access to a great knowledge base and excellent treatment in Canada. However, heritable retinoblastoma survivors are at greater risk of developing second cancers later in life and depending on what treatments we may have had as children we may also have long-term health risks. What we are critically lacking at this point is a standard of care for follow-up for RB kids beyond the age of 18. Without this protocol in place for knowing when we should follow up with our healthcare team, the burden of following up and being vigilant about healthcare consequences falls directly on the patients and the families. This can impose a lot of anxiety and stress over the course of our lives. We need research to show how can we best be followed up with throughout the course of our adult lives and what types of screening tools would be helpful for these purposes.
RB Survivor
Progress Towards This Priority
Completed Research
| Researcher | Title |
|---|---|
| B. Gallie and the Canadian National Retinoblastoma Strategy Group | National Retinoblastoma Strategy Canadian Guidelines for Care |
| K. Kimani and the Kenyan National Retinoblastoma Strategy Group | Retinoblastoma Best Practice Guidelines 2014 |
| Indian National Retinoblastoma Strategy Group | National Guidelines in the Management of Retinoblastoma |
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.