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, and paediatric shared care specialists 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, 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. 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 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.