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).
People in the Multi-Disciplinary Team (MDT)
The retinoblastoma MDT will be led by:
- An ocular oncologist: an ophthalmologist (eye specialist) who specialises in eye cancer. This person will ideally also specialise in paediatric ophthalmology (children’s eye care).
- A paediatric oncologist: a children’s doctor who specialises in treating cancer with medicines like chemotherapy.
Both should be familiar with retinoblastoma, and work together to plan and deliver care. When cancer is contained in the eye, the ophthalmologist leads the medical team. If cancer spreads outside the eye, the paediatric oncologist will lead the team.
A retinoblastoma MDT will also include all or some of the following people (click the tab to learn more about each specialist):
Retinoblastoma Care Co-ordinator
At many retinoblastoma treatment centres, care is co-ordinated by a single member of the MDT. The Care Co-ordinator helps families prepare for appointments, procedures, treatments, and medical consultations. They focus on personalised care, often supporting families emotionally while working with colleagues and outside agencies to address patient and family needs. This role is usually held by the Clinical Nurse Specialist or orthoptist.
Clinical Nurse Specialist (CNS)
An expert nurse who specialises in a particular diagnosis or medical specialty, such as eye care, children’s cancer, or retinoblastoma specifically. A key member of the MDT, the CNS supports patient families from diagnosis through treatment and follow-up care.
This includes nursing care (such as managing symptoms and treatment side effects), case management (such as treatment planning and coordination), and liaison (such as providing emotional support and health education to families, and collaboration with other medical and research teams.
Orthoptist
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Optometrist
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Genetic Counsellor
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Psycho-Oncologist
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Child Life or Hospital Play Specialist
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Oncology Social Worker
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Pathologist
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Radiologist
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Interventional Radiologist
An imaging specialist who uses techniques like ultrasound and x-ray to guide treatment delivery. They perform catheterization to deliver intra-arterial chemotherapy into the eye.
Radiation Oncologist
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Dietitian
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Ocular Prosthetist (artificial eye maker)
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The MDT and Research
As well as improving patient care, the multi-disciplinary team builds a stronger bridge between clinical care, basic science research, and clinical research.
Evidence-based retinoblastoma care begins with real-world patient and family needs. They stimulate meaningful scientific research and rigorous clinical studies to improve care. The combined expertise and observational power of the MDT supports this Bedside-to-Bench-to-Bedside cycle of progress.
The Tumour Board / MDT Meeting
Members of the Multi-Disciplinary Team meet regularly to discuss individual patients; usually weekly, fortnightly or monthly. Frequency varies between hospitals, depending on the number of patients they care for.
This group meeting is called a “Tumour Board” (common in North America) or “MDT Meeting” (common in the UK). For clarity, we refer here to the meeting as the Tumour Board, and the diverse group of specialists involved in care as the MDT.
Every newly diagnosed child is discussed at the Tumour Board. Their case will be re-presented for further discussion when tumours relapse or new tumours grow, and when major decisions are being made about their care.
The multi-disciplinary team will use their collective expertise to review EUA findings, imaging, and results of other assessments. They will consider your child’s specific circumstances and individual needs to recommend a treatment and supportive care plan.
Children may be discussed by multiple teams, particularly if they receive eye care at one hospital, and oncology care at a different hospital. For example, a child’s case may be reviewed by the retinoblastoma tumour board. If chemotherapy is recommended, the medical oncologist may also present the child for discussion at their paediatric oncology tumour board.
In some countries, retinoblastoma centres collaborate to enhance patient care. This collaboration may include a regular national or international tumour board, where specialists jointly review and discuss patients from across the different hospitals in their partnership.
The Tumour Board structure includes several key roles (click the tab to read more about each):
Tumour Board Lead
At many retinoblastoma treatment centres, care is co-ordinated by a single member of the MDT. The Care Co-ordinator helps families prepare for appointments, procedures, treatments, and medical consultations. They focus on personalised care, often supporting families emotionally while working with colleagues and outside agencies to address patient and family needs. This role is usually held by the Clinical Nurse Specialist or orthoptist.
Tumour Board Coordinator
An expert nurse who specialises in a particular diagnosis or medical specialty, such as eye care, children’s cancer, or retinoblastoma specifically. A key member of the MDT, the CNS supports patient families from diagnosis through treatment and follow-up care.
This includes nursing care (such as managing symptoms and treatment side effects), case management (such as treatment planning and coordination), and liaison (such as providing emotional support and health education to families, and collaboration with other medical and research teams.
Ocular Oncologist
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Paediatric Oncologist
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Clinical Nurse Specialist (CNS)
An imaging specialist who uses techniques like ultrasound and x-ray to guide treatment delivery. They perform catheterization to deliver intra-arterial chemotherapy into the eye.
Some of the key points considered at the Tumour Board include:
- Your child’s age and general health.
- Whether cancer is in one or both eyes.
- Number, size, and location of tumours within the eye.
- Whether cancer has spread, or is likely to spread, beyond the eye.
- Any national or international treatment guidelines.
- Previous treatment and any complications.
- Potential barriers to treatment.
- Family history of retinoblastoma.
The recommended plan will then be discussed with you during a follow up clinic appointment or telephone call.
Questions to Ask
- Does your hospital have a retinoblastoma multidisciplinary team?
- Who is on your retinoblastoma MDT?
- Who attends the MDT meeting / Tumour Board?
- How often will the Tumour Board discuss my child’s care?
- Does the hospital participate in a wider Tumour Board with other retinoblastoma specialists? What are the details?
- Who will represent me / my child’s welfare at the Tumour Board?
- How will I be told what is discussed and recommended for my child?
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. Read more about the treatment plan and care pathway.
