Quality of Life Awards 2017

To enhance life today these projects aim to have a direct benefit on the everyday lives of people affected by a brain tumour.

Quality of survival in a Europe-wide clinical trial

This funding supports the quality of survival aspects of the European clinical trial entitled SIOP-PNET5-MB. This trial is for children with medulloblastoma tumours that have been defined in the clinic as "standard risk". The purpose of the trial is to assess whether treatment can be reduced so that these children experience less long term side effects, but still benefit from the anti-tumour activity of the protocol.

A key part if this trial is to make sure that the decreased treatment has a real benefit to children in terms of their long term quality of life. Professor Kennedy and his team have spent many years developing ways to measure quality of life aspects from the perspective of the child, as well as their parents. This work is now being put in place as a formal part of the PNET5 trial.

The team will be helping clinicians across Europe to administer special questionnaires so they can assess things like memory, mobility and behaviour as well as how the child, and their parents perceive their ongoing health and wellbeing. This is a real step towards halving the harm of children going through treatment.

Developing a self-management program

According to Professor Sharp self-management (a person's active participation in rehabilitation to minimise adverse effects of illness and promote survival, health and well-being) can improve quality of life in people with a range of conditions including cancer. no-one has yet attempted to develop a self-management programme for brain tumour survivors.

Professor Sharp and her team will start by looking at the research that has been done into self-management programmes for other cancers, as well as those used currently by brain tumour survivors. She will look for the aspects of these previous or existing programmes to determine which worked best.

When these aspects have been identified the research team will work with those personally affected by brain tumours, their loves ones and other healthcare professionals to develop an effective self-management programme to improve survivors' lives today.

Reducing the effects of fatigue

This project, entitled Brain Tumour: Lifestyle, Intervention and Fatigue (BT-LIFE), will look at the feasibility of providing structured lifestyle and behavioural interventions to adults suffering from fatigue after the diagnosis of a primary brain tumour.

In researching our quality of life publication, Losing Myself: The Reality of Life with a Brain Tumour, we found that fatigue was a factor in two out of every 3 people with a brain tumour, and that for 40% of people rated their fatigue as severe. The work by Dr Rooney and his colleagues will aim to address this through an intervention study.

The study will be formed of three groups of adults who have completed treatment for a primary brain tumour and have moderate or severe fatigue. All groups will be given a baseline level of information about how they can find support through The Brain Tumour Charity. In addition, each group will be given a different level of intervention in areas such as diet and exercise advice. It is hoped that this will show us what we can do to help people combat fatigue and improve their everyday lives after brain tumour diagnosis and treatment.

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