Title: Developing a supported self-management programme to improve quality-of-life in adult primary brain tumour survivors
Funder: The Brain Tumour Charity

Abstract: Why this study is needed: Living with and beyond a diagnosis of a brain tumour can adversely affect many aspects of people’s lives and their quality-of-life (QoL). There is an urgent need to find effective ways to improve QoL in adult primary brain tumour survivors. What this study is about: In people with chronic conditions, self-management – a person’s active participation in rehabilitation to minimise adverse effects of illness and promote survival, health and well-being - can improve QoL. 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 these programmes are probably unsuitable for this group. Aim of the study: We will develop a supported self-management programme to improve QoL in adult primary brain tumour survivors. What we will do: In phase 1 (“what works”), we will bring together previous studies of cancer self-management programmes. We will describe what these involved, how they were delivered and by whom, and identify what elements of the programme led to better outcomes. In phase 2 (“what do people think”) we will conduct three sets of in-depth interviews with health professionals who manage adult brain tumours, adult primary brain tumour survivors and their carers. We will identify: self-management strategies currently used; what influences whether survivors use particular strategies; and what helps or hinders self-management. In phase 3 (“solving the problem”), together with health professionals, survivors and carers, we will jointly design a self-management programme. In phase 4 (“what would it cost”), we will make a preliminary assessment of the potential costs and benefits if the programme was rolled-out across the health service Relevance to people with a brain tumour: The project has potential to improve QoL in primary brain tumour survivors.

Lay abstract: Why this study is needed: Living with and beyond a diagnosis of a brain tumour can adversely affect many aspects of people’s lives and their quality-of-life (QoL). There is an urgent need to find effective ways to improve QoL in adult primary brain tumour survivors. What this study is about: In people with chronic conditions, self-management – a person’s active participation in rehabilitation to minimise adverse effects of illness and promote survival, health and well-being - can improve QoL. 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 these programmes are probably unsuitable for this group. Aim of the study: We will develop a supported self-management programme to improve QoL in adult primary brain tumour survivors. What we will do: In phase 1 (“what works”), we will bring together previous studies of cancer self-management programmes. We will describe what these involved, how they were delivered and by whom, and identify what elements of the programme led to better outcomes. In phase 2 (“what do people think”) we will conduct three sets of in-depth interviews with health professionals who manage adult brain tumours, adult primary brain tumour survivors and their carers. We will identify: self-management strategies currently used; what influences whether survivors use particular strategies; and what helps or hinders self-management. In phase 3 (“solving the problem”), together with health professionals, survivors and carers, we will jointly design a self-management programme. In phase 4 (“what would it cost”), we will make a preliminary assessment of the potential costs and benefits if the programme was rolled-out across the health service Relevance to people with a brain tumour: The project has potential to improve QoL in primary brain tumour survivors.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS