Care, support, and rehabilitation for patients with brain tumours

Scope

The Health Technology Assessment (HTA) and Health and Social Care Delivery Research (HSDR) Programmes are looking to fund high quality studies on brain tumour care, support, and rehabilitation. Studies should aim to generate robust evidence that can drive changes to enhance guidance and practice.

This funding opportunity encompasses a wide scope, welcoming applications from professionals working in brain tumour diagnosis, follow-up, rehabilitation, supportive care, and/or end of life care. Applicants may come from a range of health and care backgrounds.

We are committed to building research capacity in under-represented disciplines and encourage applications from professionals including allied health professionals (AHPs), nurses, and mental health professionals working in brain tumour care, support, and rehabilitation as lead, joint-lead, or co-applicants.

Studies may focus on any type or grade of primary adult and/or paediatric brain tumour. This includes low-grade or ‘benign’ tumours and high-grade tumours that are cancerous, primary brain tumours that have metastasised, recurrent or relapsed disease, and studies on patients in remission or living with brain cancer.

Studies focusing on the support network for patients with brain tumours (family, carers, healthcare workforce) are also within scope.

Applicants should also note that we are looking to support a range of brain tumour research outside of this opportunity. This includes a partnership with the Tessa Jowell Brain Cancer Mission to fund fellowships for AHPs to support research training for this group, and an opportunity to fund a national consortium to evaluate potential therapeutics for brain tumours.

To delineate between the scope of these calls, research into the following interventions is considered to be within scope for this HTA and HSDR ‘Care, support, and rehabilitation for patients with brain tumours’ opportunity:

• Interventions and technology for brain tumour diagnosis and post-treatment follow-up.
• Prehabilitation, rehabilitation, and other support interventions for patients, family, carers, and the healthcare workforce.
• Treatment interventions to manage side effects and late effects.

Evaluative research into the following interventions is considered to be out of scope for this opportunity, but is within scope for the national consortium funding opportunity:

• surgical interventions
• radiotherapy and proton beam therapy
• chemotherapy
• targeted therapy and immunotherapy
• any other therapeutic agents or interventions to treat brain tumours.

Implementation research as part of a larger application looking at how interventions (including: diagnostic, therapeutic, rehabilitation, and support interventions) can be integrated into clinical services is within scope. Such studies should use appropriate implementation science frameworks and expertise, and should primarily consider access, quality of care, and experience.

Remit

This opportunity accepts applications concentrating on improving care, support, and rehabilitation for patients with brain tumours and their support network. Applications may be in remit for either programme, or span the HTA and HSDR Programme remits.

HTA research proposals should seek to evaluate interventions that have existing robust evidence of efficacy, or interventions that are widely used but lack an evidence base. Proposals should evaluate effectiveness and cost-effectiveness of interventions. Applicants should have regard to the remit of the HTA Programme.

HSDR research proposals should seek to evaluate access to care, quality of care, organisation of care, workforce, and service delivery. Applicants should have regard to the remit of the HSDR Programme.

If proposals cross programme remits – such as studies that evaluate healthcare models and their component interventions – they should be directed to the programme whose main focus best aligns to the primary aim of the work.

For guidance on remit for this call, applicants may submit a short summary (maximum of 1 A4 page) of the proposed research to htagb@nihr.ac.uk or hsdrinfo@nihr.ac.uk, as appropriate.

For support in developing applications, applicants are also encouraged to contact their local NIHR Research Support Service Hub or equivalent in the devolved administrations. Early contact with Clinical Trials Units, if appropriate, will also be beneficial.

Background

While rare, brain cancer causes significant morbidity, and is the second most common type of cancer in children. Prognosis varies, with low survival often observed in cases of high-grade tumours and in recurrent disease. Diagnosis through primary care can be challenging as patients often present with non-specific symptoms, and many patients are diagnosed through emergency presentations. Patients are typically treated with a combination of surgery, radiotherapy, and/or chemotherapy, based on needs and condition. Frequent follow-up imaging can be distressing for patients and caregivers, and current imaging strategies would benefit from evidence-based optimisation.

Specialist paediatric services are provided using a shared care model (.PDF). While definitive diagnosis and treatment planning are the responsibility of principal treatment centres, some treatments and supportive care are typically provided closer to home at paediatric oncology shared care units, under the guidance of the principal treatment centre.

During and after therapy, patients often experience a range of side effects and long-term effects from their brain tumour and from treatment. 84% of adults with a brain tumour surveyed by The Brain Tumour Charity did not have all the support they needed, with a majority of people needing more help with side effects, symptoms, and with emotional support. Patients may benefit from holistic rehabilitation often delivered by AHPs, yet many patients are not identified for referrals to rehabilitation (.PDF) and after-care services. Patients often experience long wait times to access support delivered by non-specialist community services (.PDF) which are not always best equipped to support the specific needs of patients with brain tumours.

NICE guidelines recommend the inclusion of rehabilitation services at diagnosis and at every stage of follow-up. Timely access to prehabilitation, rehabilitation, supportive care (including psychological and mental health support), and palliative and end of life care services is increasingly regarded as a priority in the NHS (.PDF). However, NICE guidelines on rehabilitation and other aspects of supportive care for patients with brain tumours are limited by a lack of evidence.

The aim of this opportunity is to generate high-quality evidence from a range of study designs which can be used to enhance and develop clinical guidance, thereby improving care, rehabilitation, support, outcomes, and quality of life throughout the brain tumour journey for patients and their support network.

Areas of interest

In keeping with the broad nature of this call, proposals may address a wide range of areas in need of research around care, support, and rehabilitation for patients with brain tumours of all ages, and their support network, with a view to generate the evidence needed to improve guidance and care.

Applicants may wish to consider the priorities for research identified in NICE guideline NG99, in the James Lind Alliance Neuro-oncology Priority Setting Partnership and in the subsequent collection of Cochrane systematic reviews on brain tumours.

Please note that while the areas of interest below are delineated by programme remit, research proposals may cross programme boundaries, incorporating elements from both the HTA and HSDR Programmes, e.g. looking at intervention effectiveness and impact on the quality of care delivered.

Evaluations of prehabilitation, rehabilitation and/or support interventions may also investigate outcomes including but not limited to: post-intervention healthcare use, return to everyday life (e.g. work, education), intervention adherence, symptom management, and overall survival.

The following areas are of interest to NIHR, though other areas within remit of the participating programmes can be studied with appropriate justification:

HTA Programme

Diagnosis and follow-up:

• evaluating diagnostic interventions or technologies including neuroimaging, which may impact patient stratification and inform prognosis
• optimising follow-up imaging timings, which may be based on factors including molecular, histological, and clinicoradiological features, and tumour type

Prehabilitation and rehabilitation:

• evaluating repurposed, optimised, and/or new prehabilitation and rehabilitation interventions

Long-term support:

• evaluating repurposed, optimised, and/or new interventions to manage side effects and late effects
• evaluating repurposed, optimised, and/or new support interventions for patients, family, carers, and the healthcare workforce

Where proposals focus on new interventions, the intervention should have existing robust evidence of efficacy.

Smaller-scale feasibility (external pilot) studies will also be considered by the HTA Programme, where robust justification is provided that such a study is necessary before proceeding to full evaluative research. Applicants should clearly outline how findings from feasibility work will inform progression to a future proposal for evaluative research.

HSDR Programme

Diagnosis and follow-up:

• evaluating alternative pathways in primary care and in the community (including opticians) for faster diagnosis
• evaluating pathways in secondary care to reduce delays in diagnosis
• understanding how tumour molecular characterisation information is currently being used in decision-making and disease management
• exploring access to and use of genomic testing for tumour molecular characterisation. Evaluating genomic testing pathways and services
• understanding the impact of optimising the timing of follow-up imaging to reduce overscanning burden on patients (including children who receive follow-up into adulthood), family, and carers

Brain tumour care pathway, transitions, and clinical settings:

• investigating and evaluating pathway redesign -for example, earlier and improved access to rehabilitation, after-care support, palliative and end of life care
• investigating and optimising service transition from paediatric to adult services for patients who are teenagers and young adults
• evaluating care models in paediatric oncology shared care units to understand impact on quality of care – for example, new models that improve access to more treatments closer to home, and models that improve access to other services
• patient (including children and older people), family, carer, and workforce experience of care, prehabilitation, rehabilitation, and after-care support services, and of interventions

Prehabilitation and rehabilitation:

• improving understanding of models of effective prehabilitation and rehabilitation, including modes of delivery, location, timing, and duration
• understanding how to integrate prehabilitation and rehabilitation interventions into clinical services, and how patients transition between different services, including how to maximise patient, family, and carer access to, and experience of, interventions over months or years

Long-term support:

• evaluating models of long-term care and support, including for patients with slow growing tumours at risk of progression and/or malignant transformation
• understanding how to integrate interventions to manage side effects and late effects, and support interventions into clinical services, and patient, family, carer, and workforce experience of these interventions

Workforce:

• exploring multidisciplinary team models, composition and skill mixes. Assessing optimal skill mixes and professional roles (including voluntary and community sector roles), and how they facilitate service transition and out of hospital care
• assessing the impact of brain tumour care delivered by professionals – such as specialist AHPs and clinical nurse specialists – on access and adherence to prehabilitation, rehabilitation, and after-care support, and on quality of care
• evaluating the impact of community based and in-hospital paediatric roles – such as special educational needs coordinator teachers and play therapists – on children’s understanding of their condition, and on quality of care delivered through the extended paediatric service

Social care:

• models of support that maximise the outcomes that are important to patients and their carers – where relevant, models of shared decision-making or other approaches to delivering personalised social care

Caregiver support and end of life care:

• evaluating models of care to support family, carers, and the healthcare workforce, including those to meet emotional and mental health needs. Improving access to these services
• understanding how to best deliver advanced care planning, including addressing progressive communicative and cognitive impairments, involving family and carers, and minimising late hospice referral
• improving access to bereavement services for family and carers. Exploring how to best support family (including siblings for paediatric patients) and carers after the loss of individuals at different stages of life

Supporting information

This document supports the Health Technology Assessment (HTA) Programme and Health and Social Care Delivery Research (HSDR) Programme funding opportunity for research into the care, support, and rehabilitation for patients with brain tumours.

The research need section provides further information to support the areas of interest outlined in the commissioning brief. This is followed by examples of relevant previously funded HTA studies on brain tumours.

Research need

Diagnosis

Surveys show that patient experience of diagnosis is rated as the most challenging aspect of brain cancer care in the UK. Brain tumour presentations can be difficult to recognise, resulting in many patients being diagnosed through emergency presentations, rather than through recognition and referral from primary care. Faster diagnosis is likely to be beneficial, yet there remains a need to evaluate new pathways that enable faster diagnosis, particularly those with a view to improve recognition on presentation in primary care and at optician appointments. Furthermore, it is important that services are equipped to utilise any new diagnostic tests to detect brain tumours.

As our knowledge of brain tumours improves, it is important to identify optimal models of care, support, prehabilitation and rehabilitation for patients with different types of brain tumours, based on molecular, histological, and clinicoradiological features. Work could assess how well this information is understood and is being used in decision-making and disease management, aiming to refine and develop guidance on treatment stratification, follow-up, and after-care, based on these insights.

Enhancing care and support

Ensuring continuity of care during service transition can be challenging. Transitions from hospital to community care, and from paediatric to adult services for patients who are teenagers and young adults, are in need of improvement to ensure appropriate and equitable care. Research into innovative models of transition involving charities and patient organisations, and using experts in care coordination such as clinical nurse specialists and allied health professionals (AHPs), is of interest.

Multidisciplinary team (MDT) working is the standard for cancer care. MDT composition varies based on needs, but some practitioners such as palliative and end of life specialists (.PDF), and paediatric shared care specialists (.PDF)do not regularly attend, despite potential benefits. Research could explore MDT skill mix and the value of different roles to inform composition. Specialist AHPs are key to delivering holistic brain tumour rehabilitation care. However, as there is limited evidence to support best practices for these professionals (.PDF), there is a need to evaluate models of care using AHPs. Likewise, there is a need to examine the impact of early access to AHP care during prehabilitation and to assess post-treatment continuity of care and rehabilitation outcomes.

It is important that care and rehabilitation are responsive to patient needs and preferences. While outcomes are linked to tumour grade, longitudinal studies are required to understand how patient need changes, and to use this to optimise rehabilitation timing and duration (.PDF). There is a need for evidence to support the use of prehabilitation, rehabilitation, supportive care, and psychological care interventions and care models in clinical guidelines. Specifically, research is needed on interventions and models of care to enhance prehabilitation, neurocognitive rehabilitation, side effect and late effect management (including fatigue and pain), and to improve mental health for both patients and their caregivers.

To support early integration of palliative and end of life care services, research is needed to better understand if early referral before a potential loss of patient capacity improves quality of life for patients with brain tumours.

Groups with additional challenges

Children with brain tumours and their families, including siblings, face additional challenges during care. There is a need to explore and evaluate ways of improving in-hospital experience for children and their families, with a focus on health-related outcomes and quality of care. Paediatric care utilises special educational needs coordinator teachers and play therapists (.PDF) (.PDF) to deliver services, yet there is a lack of research to understand if these roles can enhance children’s comprehension of their illness, and can improve quality of care, including through contributions to an MDT. While distance to care is improved by service provision in paediatric oncology shared care units, research could evaluate the clinical impact of therapeutic or supportive care delivered in these shared care settings. Diagnostic and follow-up scans can be challenging, causing distress in children, and anxiety for the family awaiting results. It is important to collect data to optimise follow-up timing throughout childhood and into adulthood, balancing surveillance benefit and reducing overscanning.

Slow growing tumours such as low-grade gliomas are more prevalent in younger patients. Prognosis and survival are typically better than higher grade tumours, though many tumours recur or progress. As such, there is a need to understand how to provide long-term care, support, and follow-up for patients with slow growing tumours.

Family functioning and relationships suffer during brain tumour treatment, with family and carers experiencing unmet needs. There is a need for mixed methods research to explore the experiences of families and carers with current support strategies and interventions, which could consider changing emotional, informational, and practical needs. Research could also examine access to mental health and bereavement support services, impact on emotional and physical wellbeing, caregiver burden, and health economic implications such as return or productivity at work, and healthcare use.

Examples of HTA-funded studies on brain tumours

• 16/31/136; HTA; SPRING - Seizure Prophylaxis IN Glioma
• NIHR129748; HTA; Surgeons Trial Of Prophylaxis for Epilepsy in seizure naïve patients with Meningioma: a randomised controlled trial (STOP'EM)

Please carefully review the following call documents before applying:

• Stage 1 guidance notes
• HSDR supporting information for applicants

Research Support Service

Got a research idea and not sure how to turn it into a funding application? The free NIHR Research Support Service (RSS) supports researchers in England to apply for funding, and to develop and deliver clinical and applied health, social care and public health research post award. Find out how the RSS can help you.

Download application form template

You can download a template of the application form below. Please use this template as a guide to help you prepare your application. This Word document of the Stage 1 application form is to be used as a guide only. It is designed to help you complete the online application form only. For example, to see how many characters are accepted in each section and to see how information in the form is laid out. Please do not try to use this as an application form. You must submit your application in our online Awards Management System which you can access by clicking on the 'Apply now' links when a funding opportunity is open.

Webinar

A webinar to support applications for this funding opportunity is taking place on 14 October, 2.30pm to 3.30pm.

To register, please email crossprogramme@nihr.ac.uk stating your interest in registering to attend the 'Care, support, and rehabilitation for patients with brain tumours' HTA/HSDR webinar.

When you are ready to apply, you will need to log in to our application system to apply.

The closing date is 08 January 2025 at 13:00