Pharmaco-resistant epilepsy treatment options & Quality of Life V1
Research type
Research Study
Full title
Influence on Quality of Life of various treatment choices of people with pharmacoresistant epilepsy
IRAS ID
272686
Contact name
Rohit Shankar
Contact email
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Introduction
Epilepsy surgery is recommended in people with epilepsy (PWE) whose seizures cannot be managed by anti-epileptic drugs (AEDs). The outcomes for PWE assessed by an epilepsy specialist to receive surgery, focusing specifically on seizures, mental and social wellbeing post-surgery compared to those who refuse surgery will be investigated.
Stage 1: Treatment Plan
An epilepsy specialist will review an identified cohort of PWE (serial no-attenders to ED). Reviewed PWE will be divided into four groups depending on the assessor's recommendations and PWE engagement and treatment choice.
Stage 2: Pre-Treatment Questionnaire
All consenting PWE will complete a set of questionnaires before beginning their treatment and at their reviews. Information on side effects, medication effectiveness, compliance, Emergencies (ED, paramedic attendance, rescue medication), risk assessments (Sudden Unexpected Death in Epilepsy (SUDEP) & Seizure Safety Checklist) and quality of Life (QOL) scales (QOLIE-31 and Connect Epilepsy tool)
Step 3: Treatments
Each group will be offered treatments as per routine clinical practice and choice:
Group 1: PWE eligible for surgery:- This group will be referred to a tertiary centre (Bristol) for suitable assessment and surgery. PWE may receive 3rd generation AEDs while their decision for surgery awaits confirmation.
Group 2: PWE either is ineligible for surgery or choose not to be referred for one. PWE undergo a second assessment for most beneficial AED. They might receive 3rd Generation AEDs.
Group 3: PWE refuse surgery and/or change in medication. This group's treatment plan does not change but continue to see epilepsy specialists.
Group 4: PWE who do receive treatment change and unwilling to engage with specialist services. However, patient admissions to ED will be recorded.
Step 4: Follow Up
Each group's medical records will be reviewed on a quarterly basis for the above described data collection for a year and exit interviews for QOL scales conducted.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
20/LO/0700
Date of REC Opinion
11 Jun 2020
REC opinion
Further Information Favourable Opinion