Leeds researchers publish papers on care needs of tumour survivors

Mon 29 November

We are delighted that research funded by Ellie’s Fund, an official YBTC fund, has recently been published in the journal Supportive Care in Cancer.

Dr Emma Nicklin (above, left) has recently finished her PhD at the University of Leeds, which was funded by Ellie’s Fund. The aim of Emma's PhD was to understand the supportive care needs of long-term childhood brain tumour survivors, now teenagers/young adults, and their carers. She worked alongside Dr Florien Boele, Associate Professor of Medical Psychology (above, right).

Brain tumours are one of the most common childhood cancer registrations in the UK. Thankfully, advances in treatment have meant that young patients are now living longer. Still, after treatment survivors can experience social, cognitive and physical issues, which often become more apparent as the survivor enters young adulthood.

To learn more about this group’s needs, the team asked survivors and carers to complete a survey and invited a small number of participants to take part in an interview. Participants included childhood brain tumour survivors who were at least five years from diagnosis, currently aged 13-30, and their primary carers. In total, 112 participants (69 survivors/43 carers) completed the survey and 22 interviews were conducted (11 survivors/11 carers).

The combined findings indicated that both survivors and carers have many unmet needs in long-term survivorship. Survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Meanwhile carers had unmet needs regarding their own psychological well-being and survivor financial issues. We also found that survivors further from diagnosis, unemployed survivors and single carers were more likely to report unmet needs.

To read excerpts from the interviews with care givers and patients undertaken by the team, please click here.

To see a full analysis of the published survey results, please click here.

Dr Florien Boele, who led the research, said: “This funding provided by Ellie’s Fund has really helped kick-start my brain tumour research at the University of Leeds. The main thing we need in order to do psychosocial research is manpower – and working with Emma meant that together, we could accomplish so much more. Teenage and young adult survivors of childhood brain tumours and their carers are a unique and understudied group. The project findings show which support needs remain unmet. In our future work we will aim to fill these gaps!"

Dr Emma Nicklin commented: "I feel very fortunate to have received the Ellie’s Fund funding to complete my PhD. Throughout my PhD I had the opportunity to meet some fantastic families and hear their poignant stories. Importantly, this work extends the very limited research in this area. As a research team we are now using the PhD findings to work on future projects – one of these being the development of an intervention to support survivors with their employment goals. We really hope that our work will help to improve quality of life of both survivors and carers in long-term survivorship.”

Dr Emma Nicklin, who has now graduated from her PhD, has continued working within the Quality of Life team at the University of Leeds and is preparing to apply for further funding to build on the findings from her PhD, helping to further identify and fulfill the unmet care needs of survivors and their carers.

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