This is a quality of life (QoL) study which aims to develop a programme of ’supported self-management’ for adults with a low grade brain tumour who have finished primary treatment (or been recommended a ‘watch and wait’ approach by their clinicians).
The researchers acknowledge how hard it can be for people to live with and beyond a brain tumour diagnosis. They want to develop a programme where the person with a brain tumour is supported, by both their carers and their clinical team, to actively improve wellbeing.
The researchers will carry out extensive research and interviews during this grant, which will shape what the programme looks like.
There’s an urgent need to find effective ways to improve QoL in adult primary brain tumour survivors.
Living with and beyond a brain tumour diagnosis can have a huge impact on many aspects of people’s lives and their QoL. With brain tumours this can include changes to their personality and behaviour, speech problems, mobility problems or even pain and fatigue.
In other long-term conditions, improved QoL has been achieved when the person personally affected is supported in playing an active role in their life through, and after, treatment. This is especially true if people are helped and encouraged to self-manage by health professionals and family members. Programmes that help survivors to help themselves (’supported self-management’) have been developed in several cancers, but the unique challenges experienced by brain tumour survivors mean that a programme needs to be tailored to this group.
Initially, this study will aim to help adults with low grade brain tumours improve their QoL after first treatment, or during their ‘watch and wait’ observations.
If feasible, the researchers aim to refine the programme so it can be used within the health service.
Patients who self-manage may feel more empowered and are better able to make informed decisions, cope with treatment and treatment-related side-effects, and navigate health systems and, consequently, are more satisfied with care.
The first part of this study will look at self-management programmes that have been developed for other chronic illnesses. They will see what these involved, how they were delivered and by whom, and identify which elements of the programme led to better outcomes.
Next, Dr Sharp and her team will consult with adults who have (or had) a primary low grade brain tumour, their carers and clinicians to find out what strategies they use and how well they work.
Lastly, together with health professionals, survivors and carers, they will jointly design a self-management programme and assess the costs and benefits if the programme was rolled-out across the health service.
Research is the only way we will discover kinder, more effective treatments and, ultimately, stamp out brain tumours – for good! However, brain tumours are complex and research in to them takes a great deal of time and money.
Across the UK, over 100,000 families are facing the overwhelming diagnosis of a brain tumour and it is only through the generosity of people like you can we continue to help them.
But, by setting up a regular gift – as little as £2 per month - you can ensure that families no longer face this destructive disease.
Professor Sharp is a Professor of Cancer Epidemiology in the Institute of Health & Society at Newcastle University. She has had over 200 articles published in peer reviewed scientific journals.