What are the psychological effects of retinoblastoma treatment on young adults?

Nicola has had a flying start to her PhD with 16 interviews and 2 focus groups completed and lots of interest for more to come. She is delighted with the response to her call for participants, which shows the need in the community affected by this particular cancer. As Nicola says:

“There are unique challenges for people with this particular eye cancer. It tends to be diagnosed and treated before the child is five years old, so all the treatment decisions are made by the parents and doctors at that time. However, the effects of treatment can create lifelong challenges for those concerned. Coming to terms with these can involve a lot of difficult feelings, especially in the teenage years.

Treatment effects

In some cases, treatment can involve the removal of one, or (rarely) even both, eyes. In these cases, the treatment leaves a visible impact on the child as they grow into adulthood. The loss of an eye can lead to bullying during childhood. Some retinoblastomas have a genetic component which is an issue for young adults as they think about their life going forward, particularly in terms of having their own children. The presence of retinoblastoma in youth can be an indicator of vulnerability to future cancers in other areas, especially sarcomas.

These are big issues for young people to be grappling with. I want to work with them to co-design a tool that will help them at this time and give them the support they deserve, to move forward confidently into adulthood.”

Developing support

Nicola’s PhD is funded by the charity The Childhood Eye Cancer Trust (CHECT) who want to develop appropriate support for survivors of retinoblastoma. So far, all her respondents have come via the charity but she also aims to recruit using the two hospitals who treat the condition in the UK, Great Ormond Street Hospital and Birmingham Children’s Hospital, both of whom have now started recruiting for the study.

Joining the team

Nicola is delighted to be part of the qualitative research team here at ECSG and is looking forward to the support offered by colleagues working in the same methodology and subject area. Her supervisor Dr Debra Howell is excited for her to be joining the team, and says “Nicola is an extremely capable and enthusiastic student and we are delighted that she has joined ECSG’s qualitative research team. Her work to co-design an intervention to support patients affected by retinoblastoma is important, and sits well within ECSG’s public-facing agenda.”