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Unmet needs of patients and carers across the brain tumour pathway

A recent study highlights gaps in neuro-onoclogy services provided nationally

Patients with cancer have tumour-specific priorities. Each cancer diagnosis, especially that of a brain tumour, has its own specific needs with respect to the services provided. It is therefore vital to evaluate the care offered to people affected by brain tumours, as generic cancer services do not meet the needs of all patients.

Research by Dr Fiona Walter at the University of Cambridge wanted to understand the experience of patients with brain tumours, and their carers, during different aspects of their treatment.

The study, recently published in Cancer Management and Research, looked at neuro-oncology services in the UK by conducting 136 surveys and 55 in-depth interviews.

The participants represented a variety of individuals with various brain tumour diagnoses and showed a wide range of opinions on the neuro-oncology services offered. When asked people often thought there was 1) a lack of information provided, 2) a gap in the support provided after discharge and 3) an unwillingness for patient involvement in research.

Lack of information

The respondents felt that the information provided was insufficient and difficult to understand. It is widely recognised that appropriate information provision throughout a cancer diagnosis can represent a logistical challenge.

The research team suggests that efforts can be made to overcome this include patient-centred service organisation and integration of information provision early in the care pathway.

Support after treatment

In addition, participants also felt that the support provided, especially psychological, following treatment was lacking.

However, while this sentiment has been evidenced in previous studies as well, the researchers have few recommendations as to how this can be addressed.

Involvement in research

Most of the patients and carers participating in the study expressed an interest in on-going research, as well as participating in research. However, majority of them weren’t approached to participate in research.

One likely factor could be the limited number of clinical trials for which they would be eligible for in this disease area. The establishment of more clinical trials with broader inclusion criteria would be one way forward to improve participation in research.

Our own adaptive clinical trial BRAIN-MATRIX aims to address exactly this point, by enabling more people to be included in a research trial.

The findings from this study enhance our knowledge of what patients and carers experience within neuro-oncology services. It has highlighted the unmet needs of members of our community and will hopefully encourage an improvement in the services offered in treatment centres.

In the meantime we will continue to provide our independent support services in the hope that we can improve life today, and ultimately halve the harm caused by brain tumours and their treatments.