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Cancer patients have specific priorities for the tumor. Each cancer diagnosis, especially that of a brain tumor, has its own needs with regards to the services provided. It is therefore essential to evaluate the care provided to people with brain tumors because generic cancer services do not meet the needs of all patients.
The research of Dr. Fiona Walter of the University of Cambridge wanted to understand the experience of patients with brain tumors and their caregivers during different aspects of their treatment.
The study, recently published in Cancer Management and Research, reviewed 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 tumor diagnoses and expressed a wide range of opinions about the neuro-oncology services offered. When asked, people often thought that there was 1) a lack of information provided, 2) a gap in support provided after the exit and 3) a reluctance to participate looking for patients.
The lack of information
Respondents felt that the information provided was insufficient and difficult to understand. It is widely acknowledged that providing appropriate information throughout a cancer diagnosis can be a logistical challenge.
The research team suggests that efforts could be made to overcome this problem, including the organization of patient-centered services and the integration of the provision of information at the very beginning of the journey of care.
Post-treatment support
In addition, participants also felt that support provided, especially psychological, after treatment was lacking.
However, although this feeling has been highlighted in previous studies, researchers have made few recommendations on how to address this problem.
Participation in research
Most of the patients and caregivers participating in the study expressed interest in ongoing research, as well as participating in the research. However, the majority of them were not asked to participate in research.
A likely factor could be the limited number of clinical trials to which they would be eligible in this disease area. Establishing more clinical trials with broader inclusion criteria would be one way to improve participation in research.
Our own adaptive clinical trial BRAIN-MATRIX
aims to address precisely this point by allowing more people to be included in a research essay.
The results of this study improve our knowledge of the experience of patients and caregivers in neuro-oncology departments. It has highlighted the unmet needs of our community members and will hopefully encourage an improvement in the services offered at the treatment centers.
In the meantime, we will continue to provide independent support services in the hope of improving lives today and halving the damage caused by brain tumors and their treatments.
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