BE SPeCiaL: Brain tumours: Enhancing Supportive and Palliative Care in patients And Loved ones

Description

Joint PI’s Dr Florien Boele and Dr Louise Murray

Background

Enhanced activity, early involvement of palliative care, and carer support have been shown to provide benefits for patients with primary malignant brain tumours (PMBTs) and their carers. Such interventions have also been identified as priorities in supporting patients with PMBT and their carers. Yet, these evidence-based interventions are not widely implemented, including in Leeds Teaching Hospitals NHS Trust (LTHT). This lack of accessibility increases health inequalities. BE SPeCiAL is a project to improve services for patients at Leeds Teaching Hospitals NHS Trust. Its full name is: BE SPeCiAL: Brain tumours: Enhancing Supportive and Palliative Care in patients And Loved ones.

Objectives

We will tailor existing, effective interventions to maximise accessibility, and perform a service improvement project. The support programmes will be offered as a ‘choice menu’ through existing care pathways with decisions to engage made jointly by patients, carers, and healthcare professionals guided by clinical considerations.

Project design

This is a non-randomised, controlled implementation project and is classed as a service improvement project.

We aim to improve support services for patients with brain tumours, and their carers, and then find out what they think about the improved services.

There are three phases in this project:

Phase 1 (18 months) current service provision: we will evaluate the current services available at LTHT through collecting information (shortly after diagnosis, at 3, and 6 months) on patients’ and carers’ wellbeing and support service use. We anticipate collecting data from 75 PMBT patients and 68 carers. Tailoring of existing, evidence-based interventions for local population: At the same time as gathering data on current service provision, we will consult service users and providers to determine how we might enhance accessibility and fit (i.e. modifiable components) of supportive measures (enhanced activity, early involvement of palliative care, and carer support), whilst keeping intervention core components intact.

Phase 2 (36 months): once the modifiable components have been identified and pathways optimised to enhance accessibility and fit, we will offer the evidence-based interventions to all new PMBT patients and carers and collect the same information detailed above, at the same time points. We anticipate collecting data from 125 PMBT patients and 114 carers.

Phase 3 (6 months): in the final phase we will compare the person-centred outcomes of PMBT patients and carers who did not receive enhanced care (phase 1), and those who did (phase 2). Service use and costs will also be compared.

Impact

Participants will immediately benefit from access to evidence-based supportive interventions through the implementation study. However, the true impact will be realised when these tailored, holistic interventions are adopted into (inter)national guidelines, establishing a new gold standard of comprehensive patient care.

Patient and Public Involvement (PPI)

The BE SPeCiaL study emphasises the vital role of PPI, lived experience will drive the research design, implementation and dissemination. Through strong PPI input we hope to:

• Ensure all three BE SPeCiaL interventions are accessible, relevant and acceptable to diverse PMBT patients and carers
• Address health inequalities in supportive care access through targeted engagement with underrepresented groups
• Create sustainable implementation pathways informed by patient and carer priorities
• Build capacity for meaningful PPI in brain tumour research
• Establish new standards for co-production in supportive care research

 

Could you help us?

Are you a bi-lingual medical or nursing student? Could you help us with translating study materials and questionnaires to non-English speakers. This is a paid opportunity.

If you may be able to help please contact - Emma Nicklin (E.Nicklin@leeds.ac.uk)