Ways Ahead: Improving support for people with brain tumours, version 1
Research type
Research Study
Full title
Ways Ahead: Developing a supported self-management programme for people living with low- and intermediate-grade gliomas
IRAS ID
269814
Contact name
Linda Sharp
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
1 years, 11 months, 12 days
Research summary
Research Summary:
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.
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.
We aim to develop a supported self-management programme to improve QoL in adult primary brain tumour survivors.
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 four sets of in-depth interviews with adult primary brain tumour survivors and their carers, healthcare professionals, and cancer support professionals who manage adult brain tumours. 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 survivors, carers, healthcare professionals, and cancer support professionals we will jointly design a supported 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.
The project has potential to improve QoL in primary brain tumour survivors.Summary of Findings:
Why was the research needed? Living with a brain tumour diagnosis can impact many aspects of people's lives and their quality of life. There is an urgent need to find ways to effectively improve quality of life in adults living with a brain tumour. In people with chronic conditions, self-management - a person's active participation in rehabilitation to minimise the impact of the illness, and promote health and well-being - can improve quality of life. This is especially true if people are helped and encouraged to self-manage by health professionals and family members. Interventions to help people help themselves ("supported self-management") have been developed for several cancers, but the tumour-specific challenges experienced by people with brain tumours mean these interventions are likely unsuitable for this group.What did the study aim to achieve? Ways Ahead aimed to develop a prototype supported self-management intervention to improve quality of life in adults living with a brain tumour. To do this, the objectives were to: (1) identify the characteristics and components of successful self-management interventions that have been tested in adult cancer survivors; (2) understand what and how people are impacted by their brain tumour diagnosis and treatment; (3) identify how people with brain tumours currently engage in self-management; (4) understand the factors influencing self-management for people with brain tumours; (5) understand the role and responsibilities of, and challenges faced by, health professionals and family members in supporting self-management for people with brain tumours; (6) co-produce a prototype intervention with input from people with brain tumours, family members, and health professionals; and (7) estimate the potential costs and benefits of implementing a supported self-management intervention into current care pathways.
Who participated in the study? Ways Ahead included three groups of participants: (1) people living with a lower-grade glioma (a subgroup of malignant brain tumours), specifically a grade 2 astrocytoma or grade 2 or 3 oligodendroglioma; (2) family-members, partners, and close friends who are involved in the informal (without pay) support of people with lower-grade gliomas; and (3) health professionals (e.g. Clinical Nurse Specialists, Psychologists) involved in the care and support of people with brain tumours.
What happened during the study? Ways Ahead consisted of four research stages: (1) three systematic reviews to comprehensively understand the existing evidence base; (2) three sets of semi-structured interviews with people living with a lower-grade glioma (n=28), close family and friends (n=19), and health professionals (n=25) to recognise peoples' diverse and subjective experiences; (3) four co-design workshops and a co-design survey, working with people with brain tumours, close family and friends, and health professionals to jointly design a supported self-management intervention for people living with a brain tumour; and (4) an early health economic evaluation to examine whether it would be cost-effective to roll out a self-management intervention across the health service.
What were the results of the study? Ways Ahead has resulted in 14 papers so far, including the published protocol and a commentary, which considered the steps required to improve implementation of self-management interventions for cancer survivors. The results of the Ways Ahead study are broken down in a brief summary of each paper below:
Systematic reviews:
1. Assessing unmet needs in advanced cancer patients systematic review: We identified 24 instruments to assess unmet needs in advanced cancer. There was a lot of variety in their development, content and quality. This provides an understanding of what instruments could be used to assess the support needs of people with brain tumours.
2. Health-related quality of life in adults with low-grade gliomas systematic review: People with low-grade gliomas experience wide-ranging symptoms and impairments (e.g. cognitive impairment, seizure burden, fatigue) that can persist over time. These findings indicate the potential support needs of people with lower-grade gliomas.
3. Characteristics and components of self-management interventions for cancer survivors systematic review: We identified 32 self-management interventions, which showed promise for improving quality of life, but there were a wide variety of characteristics (e.g. provider) and components (e.g. information about condition) used. Identifying what is worth adapting from existing interventions is beneficial for future intervention development.
Qualitative analysis of the interviews:
4. People with lower-grade gliomas engagement in self-management: Participants reported engagement with 123 specific self-management strategies (e.g. accepting the tumour and its consequences) across 20 self-management strategy types (e.g. self-monitoring), indicating a willingness to engage in self-management. This provides a comprehensive understanding of how people with lower-grade gliomas currently engage in self-management.
5. People with lower-grade gliomas factors influencing self-management: Participants reported the influence of 18 factors (e.g. cognitive function) across five categories (e.g. health status) on their ability to self-manage. These findings will improve awareness of the potential challenges faced by people with brain tumours around self-management.
6. People with lower-grade gliomas impact experiences: Participants reported wide-ranging day-to-day impacts of living with a brain tumour, providing context for what different impacts mean to the individual (e.g. seizures influence ability to drive and work). These findings highlight the importance of acknowledging how the impact is experienced when determining what support may be required.
7. People with lower-grade gliomas experiences of work: Participants reported how the impact of their diagnosis influenced work, often requiring changes in job roles, adjustments to the work environment, and support from employers. These findings can help indicate the importance of work in rehabilitation for people with brain tumours, including what support might be needed.
8. Close family and friends emotional impact: Participants reported experiences of wide-ranging emotional responses to, and impacts of, the illness, uncertain prognosis, care recipients changes, and the toll of caregiving. These findings highlight the possible emotional support needs of people involved in the informal support of people with brain tumours.
9. Close family and friends informal support networks: Participants reported receiving emotional, instrumental, information, and appraisal support from their own informal networks (e.g. family/friends) to protect their well-being. These findings highlight the value of extended networks, as different support may be provided by different people.
10. Close family and friends caregiving role and responsibilities: Participants reported the wide-ranging support they provide to help people with lower-grade gliomas manage the consequences of their diagnosis and treatment. They also reported numerous challenges, particularly with balancing support without inhibiting the care recipient's independence. These findings highlight the value of informal networks for supporting people with brain tumours, but also where support may be required to overcome challenges.
11. Health professionals implementation of supported self-management: Participants reported evidence for all four constructs of the normalisation process theory, demonstrating the collective nature of, and insights into the individual roles within, supported self-management. These findings outline the considerations required to operationalise, sustain and appraise the implementation of self-management support for people with brain tumours.
Co-design findings:
12. Desired support and design preferences for a supported self-management intervention for people with brain tumours: Findings from the interviews, workshops and survey identified a desire for an 'information toolkit' with advice, signposting, and information support (e.g. possible self-management strategies). Participants acknowledged the pros and cons of support groups, face-to-face support, and the use of technology for delivering an intervention. These findings were helpful in the iterative development of a prototype supported self-management intervention for people with brain tumours.
Economic evaluation: Preliminary evaluations of the potential costs and benefits of a prototype supported self-management intervention indicated that the benefits likely outweigh the costs. This is because the intervention will empower and equip people living with the brain tumour with the knowledge and tools necessary to effectively self-manage. This has the potential to improve quality of life, and in turn, reduce productivity losses, alleviate the impact on carers, and reduce healthcare utilisation.How will this study help people with brain tumours, clinicians and researchers? These findings have considerable potential to benefit people with brain tumours, their family, and clinicians and researchers. It is the first step in a long-term strategy to develop, test and implement a supported self-management intervention for people living with a brain tumour. The self-management intervention will provide an evidence-based means of producing meaningful improvements in the lives and well-being of people living with a brain tumour. This will help people to participate more fully in home, work, and community life.
Overall, Ways Ahead raises awareness of the support needs of people with lower-grade gliomas, as well as the benefits of self-management and what support may be needed to ensure effective engagement. Dissemination of our findings may encourage clinical teams to place greater emphasis on supporting self-management in brain tumour follow-up care. These findings may also stimulate the research community to develop self-management interventions for other chronic conditions, particularly those that have, so far, been underrepresented.Is there any further research planned? We will apply for more research funding to further develop our prototype supported self-management intervention, and test whether it does help people living with a brain tumour. Members of the Ways Ahead research team are also involved in a spin-off grant application, currently in stage two of the application process, which is about researching speech and language therapy for adults living with brain tumours. This project aims to produce recommendations that suggest how health professionals could improve support for people living with speech, language, and communication difficulties due to their glioma diagnosis.
Where can I learn more about the study? A study website for Ways Ahead is available (https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fresearch.ncl.ac.uk%2Fwaysahead%2F&data=05%7C02%7CWales.REC6%40wales.nhs.uk%7Cdf94e5ac5a3c43e475af08dcd7258ae7%7Cbb5628b8e3284082a856433c9edc8fae%7C0%7C0%7C638621805848532161%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=5R3lMJpUwSt%2BRIxvbrTByujfYHA4w5AivVKIkZiwO4I%3D&reserved=0) with information about the research objectives, stages, projected impact, the research team, project partners, and possible avenues for support. The website is constantly updated with news and events, and new project outputs, to keep people informed about what the project is doing next and what it has achieved.
REC name
Wales REC 6
REC reference
20/WA/0118
Date of REC Opinion
17 Apr 2020
REC opinion
Favourable Opinion