Coping with Primary Brain Tumour Survival
Research type
Research Study
Full title
How do primary brain tumour patients perceive their ability cope with disease burden across long-term survivorship?
IRAS ID
313235
Contact name
Se Maria Frances
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 7 months, 28 days
Research summary
Rationale: A diagnosis of a primary brain tumour can be extremely upsetting and difficult for a person. After the initial diagnosis, patients undergo a series of often aggressive treatments to manage the risk the tumour poses to their health and give them the best chance of survival, while maintaining optimal quality of life. Particularly in those diagnosed with lower grade primary brain tumours, survival can extend into years. This long-term survival period however, is still impacted by the tumour and its treatment. As a result, patients may have to find ways of coping with changes in lifestyle, and physical and emotional health.
Objective: The aim of this study is to perform one-off interviews to explore how long-term survivors of primary brain tumours cope with their diagnosis and late effects of treatment. This could help identify the best ways of improving support for this patient population throughout longer-term survivorship.
Study design: Cross-sectional qualitative study with semi-structured interviews
Study population: Adult (> 18 years of age) patients diagnosed with a histologically confirmed WHO grade II or III glioma, at least > 2 years since diagnosis.
Intervention: Not applicable
Main study parameters/endpoints: Information from these interviews will include the different styles of coping strategies used by patients across the scope of their long-term survivorship, and how effective they perceive these to be.
Nature and extent of burden and risks associated with participation, benefit and group relatedness: there are no direct benefits for participants in this study, but their participation will contribute to better knowledge on the nature and perceived effectiveness of patients’ employed coping strategies. This involves small potential risks: patients may be confronted with issues that brain tumour patients have, which may pose a psychological burden on them. Moreover, it will cost participants time to complete the study procedures.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
22/NW/0404
Date of REC Opinion
26 Jan 2023
REC opinion
Further Information Favourable Opinion