DeMIE: Determining Medicine-related Issues for people with Epilepsy
Research type
Research Study
Full title
A hospital outpatient-based feasibility study to assess the use of a questionnaire to identify medication-related issues for people with epilepsy and use of a descriptive report to guide patient-led self-reporting in epilepsy consultations.
IRAS ID
196358
Contact name
Trudy Thomas
Contact email
Sponsor organisation
University of Kent
Duration of Study in the UK
0 years, 4 months, 4 days
Research summary
This pilot study is designed to determine whether a questionnaire completed by people with epilepsy (and/or their carers), which generates a report helps people with epilepsy (PwE) identify issues related to their anti-epilepsy medicines and assists in reporting and discussing those issues with their neurologist.
Research has shown that side-effects, complex prescriptions and lack of information or understanding about medicines can have a negative effect on the way PwE take their medicines and how well their seizures are controlled. Previous research has tended to focus on the perspectives of healthcare professionals and how they deal with medicines related issues however this project shifts the focus to the patient . It is hoped that by this report can empower the patient to raise medicines issues to enable a more patient-led consultation.The primary objective of the study is to assess the extent to which data collected using a self-completed personalised report enhances their consultation experience . The study is taking place in selected outpatient neurology clinics in Kent and London, and is open to UK-based adults with epilepsy, who use medicines to treat seizures and have a scheduled consultation with their neurologist within 2-14 weeks of invitation.
This study has two parts: 1) Volunteers will be recruited by each clinic and invited to learn about the study. Participants can complete the questionnaire via the internet or by mail. The questionnaire collects data on the use of prescription and non-prescription and alternative medication; and recreational drugs and factors impacting patient experience such as side-effects, perceived medicine burden and medicines adherence. Responses will be summarised in a report for each individual. 2) PwE and neurologists will use the report during a consultation and, afterwards, give their views of their experience in an interview with the researcher. 3) Patient experience will be measured before and after consultation.REC name
HSC REC A
REC reference
18/NI/0076
Date of REC Opinion
8 Jun 2018
REC opinion
Further Information Favourable Opinion