Health Systems: Pathway of Care
How to provide a detailed pathway of care or plan, outlining treatment and follow-up, to retinoblastoma patients and families?
Retinoblastoma treatment is complex, and the treatment and follow-up plans for each patient may be different. Currently, there is no uniformity in how patient families receive information about their care; most families receive information through discussion with their healthcare providers, and some written, piecemeal information.
Why Is This One of the Top 10 Retinoblastoma Research Priorities?
A pathway of care may help retinoblastoma families better understand and adhere to their individual recommended treatment and follow-up plan, alleviate distress, and improve patient outcomes.
Personal Story
Children with cancer need to be cared for in a system where they and their families are at the center of the circle of care. This is especially true and uniquely complicated for retinoblastoma given that it may be heritable, involve one or both eyes, and care is provided by a large and multi-faceted teams and can involve hundreds of clinical encounters. Patients with retinoblastoma can easily be lost in the healthcare system, for example when transitioning from pediatric to adult care. Research can tell us how to provide a detailed pathway of care or plan outlining treatment and follow-up to retinoblastoma patients and families. This will empower patients and families to be informed decision makers and ultimately improve outcomes.
Researcher
Progress Towards This Priority
Ongoing Research
| Researcher | Title |
|---|---|
| Canadian Retinoblastoma Research Advisory Board | Mapping the Retinoblastoma Patient Journey |
Completed Research
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.