Seizure in glioma related epilepsy: Patient priorities for treatment
Research type
Research Study
Full title
Seizure Control in glioma related epilepsy: Qualitative attribute selection for a discrete choice experiment into patient priorities for treatment goals.
IRAS ID
227460
Contact name
Michael D Jenkinson
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 4 months, 1 days
Research summary
Research Summary:
Gliomas are tumours arising from cells of the brain and the spinal cord that carry out a wide range of functions. In patients with this type of tumour the incidence of seizures (fits) is high - referred to as brain tumour related epilepsy. Controlling seizures is problematic in these patients, and despite best medical management over 50% will go on to have recurrent seizures.There is controversy in the literature about with anti-epileptic drugs should be used for seizure control in these patients, resulting from a lack of well conducted randomised control trials on efficacy, different side effect profiles and potential interference with other treatment for the tumour. Little is known about what patients prefer their treatment outcomes to focus on, and how this feeds into deciding which medication to use.
This study will use patient focus groups, along with literature reviews to qualitatively identify the treatment outcomes most valued by patients. This can then be used to inform discussions in the clinical setting, and further research on how different outcomes are traded against each other in decision making.
Patients eligible for this study would be over 18, with a diagnosis of glioma, who have had at least 1 seizure (fit), currently taking anti-epileptic medication, are able to communicate fluently in English and who are able to participate in a group discussion. Focus groups will be held on site at The Walton Centre NHS Foundation Trust/Aintree University Hospital NHS Foundation Trust. Participants will undergo a focus group discussion lasting approximately 90 minutes, and approximately 6 groups will run over a period of 4 months.
Transcipts from focus group discussions will be analysed for common themes and priorities, and assessed in comparison with data available in current literature and expert opinion from clinicians involved in treating this condition.
The aim of the study is to provide an insight into what treatment outcomes patients prioritise in the treatment of brain tumour related epilepsy, to supplement existing published information on health related quality of life. This will also inform further research into the outcome trade off calculations made by patients in complex decision making.
Lay summary of study results:
Glioma is a rare brain tumour that can carry poor prognosis, with reduced survival and quality of life seen in patients with glioma. Patients with glioma can develop epilepsy as a result of their brain tumour, for which they have to take medications to reduce the frequency of seizures. This has a similarly substantial impact on their quality of life and survival, with the addition of side effects from anti-seizure medications. As part of this study, we spoke to patients with gliomas about what factors they considered when deciding whether to take anti-seizure medications, or other treatments (such as surgery) for their brain tumour. Patients told us that their quality of life (QoL) was the most important factor for them in the decision-making process, and that their QoL depended on many different things, such as ability to drive. When we asked patients what side effects of their anti-seizure medications would bother them most, female patients were more likely to tell us appearance-related side effects, while male patients told us about behaviour related side effects. This study was the first of its kind that explored patients perspectives on living with gliomas and seizures, and demonstrated the importance of involving patients in decision making processes relating to their treatment. It has also allowed us to become aware of more areas for improvement in the management of glioma patients.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
17/NW/0354
Date of REC Opinion
9 Jun 2017
REC opinion
Favourable Opinion