Treatment Plan and Care Pathway
You may hear the term “care pathway” as your child goes through diagnosis, treatment, and follow-up care.
This is different from a patient’s individual treatment plan.
A treatment plan is personalised for the individual patient. This document details the schedule of prescribed therapies, including eye Exams Under Anaesthesia, medications and their precise doses. When a child is participating in a clinical trial, much of this information will also be described in the research study’s treatment protocol.
A care pathway is created for a group of patients with the same diagnosis, and tailored for the individual patient. This tool helps medical teams structure and manage complex multidisciplinary care to ensure they consistently provide safe, high-quality, evidence-based care.
This “pathway” is a comprehensive roadmap of care, from before diagnosis through treatment, follow-up care, and beyond. It describes what should happen at each stage of the cancer journey, who is responsible for each piece, and where adjustments to the plan may be anticipated.
Care Pathway Document
Some hospitals provide a document describing the cancer care pathway for individual patients, for a retinoblastoma diagnosis, or for childhood cancer in general. Others use this tool as a framework for delivering a consistent standard of patient care, but do not share the information with families. Most Care Pathway documents will clearly describe:
- The goals of treatment.
- The process of follow-up care, including referral to a long-term follow-up program after discharge from the retinoblastoma program.
- Key elements of both medical and psychosocial support care.
- How medical and psychosocial support care will be coordinated.
- How patient needs will be identified, and appropriate resources shared.
- What medical information will be shared with parents, when, and how.
- Roles within the MDT, including their purpose and responsibilities.
- How the MDT will be coordinated and work together.
- How communication will take place among the MDT and with parents.
- How patient monitoring and outcome evaluations will be done.
A Framework for Care
The Care Pathway aims to guide and support effective care, collaboration, and communication among the multidisciplinary team members, and between them and the patient’s family. Ultimately, a clear framework for patient care can help improve your child’s treatment outcomes and the cancer care experience for your entire family.
Questions to Ask
- Who is my main contact throughout care? How do I contact them, and how will they contact me outside the hospital?
- Will I receive a written treatment plan? What does this cover?
- If part of a clinical trial: Can I have a copy of the full trial protocol?
- What information will I receive, when, and how?
- Will I receive an individual care pathway document? What does this cover?
Multidisciplinary Team and Tumour Board
Your child will receive the best retinoblastoma care at a hospital with a group of professionals who work together to plan and provide specialist care. Because this group represents different healthcare specialties, they are collectively called a multidisciplinary team (MDT). The group meets regularly to discuss patient care. This meeting is often called a Tumour Board.
Read more about the MDT and Tumour Board.