Title: Quality of Life and Quality of Survival in paediatric medulloblastoma: A prospective study on children recruited to the SIOP-PNET5-MB trial
Funder: The Brain Tumour Charity

Abstract: The aims of the research programme. SIOP-PNET5-MB is a clinical trial for children and young people aged 3 to 21 years who have recently been diagnosed with medulloblastoma (MB) which aims to improve the treatment. We will measure the effects of the treatments on their QoL. Why this research is needed MB is a cancer (tumour) of the brain that usually affects children and young people. Unfortunately, the surgery, radiotherapy and chemotherapy used to treat it have unwanted effects. Many surviving patients are sadly left with life-changing learning difficulties and poor quality of life (QoL) into adulthood. We now know that the biological make-up of MB has an effect on how successful treatment is and the likelihood of cure. is project will be done. We have developed a method of using patients’ and parents’ answers to questions about their QoL to measure the effect of treatment on QoL. We have shown in previous European trials that this method works well. In the present study, children and their parents will, for the first time, be able to answer questions about their QoL before and after treatment using their laptops, personal computers, or hospital computers. Relevance of research to people with a brain tumour. Patients in the study will have the benefit of 1) having treatment tailored to their tumour’s biology and 2) having brain scans and radiotherapy plans checked by an international expert panel to correct any deficiencies before treatment is given. The benefits will include fewer hormonal and hearing deficits, decreased learning difficulties, and better survival rates. We would like these benefits to be enjoyed by UK patients by making this trial available to them. Assessment of the QoL of children in the trial from all the other participating countries is also the responsibility of the applicants and its funding is vital to the success of the trial across Europe which would bring benefits, persisting through adulthood, to future children with MB, even if UK patients were not able to participate in the trial itself.

Lay abstract: The aims of the research programme. SIOP-PNET5-MB is a clinical trial for children and young people aged 3 to 21 years who have recently been diagnosed with medulloblastoma (MB) which aims to improve the treatment. We will measure the effects of the treatments on their QoL. Why this research is needed MB is a cancer (tumour) of the brain that usually affects children and young people. Unfortunately, the surgery, radiotherapy and chemotherapy used to treat it have unwanted effects. Many surviving patients are sadly left with life-changing learning difficulties and poor quality of life (QoL) into adulthood. We now know that the biological make-up of MB has an effect on how successful treatment is and the likelihood of cure. is project will be done. We have developed a method of using patients’ and parents’ answers to questions about their QoL to measure the effect of treatment on QoL. We have shown in previous European trials that this method works well. In the present study, children and their parents will, for the first time, be able to answer questions about their QoL before and after treatment using their laptops, personal computers, or hospital computers. Relevance of research to people with a brain tumour. Patients in the study will have the benefit of 1) having treatment tailored to their tumour’s biology and 2) having brain scans and radiotherapy plans checked by an international expert panel to correct any deficiencies before treatment is given. The benefits will include fewer hormonal and hearing deficits, decreased learning difficulties, and better survival rates. We would like these benefits to be enjoyed by UK patients by making this trial available to them. Assessment of the QoL of children in the trial from all the other participating countries is also the responsibility of the applicants and its funding is vital to the success of the trial across Europe which would bring benefits, persisting through adulthood, to future children with MB, even if UK patients were not able to participate in the trial itself.

Research activity codes: 6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS