SIDE-PRO Study: A Measure To Identify Treatment Side Effects In Adults With An Intellectual Disability And Epilepsy

Identifying treatment Side effects in adults with an Intellectual Disability and Epilepsy: Development of Patient-Reported Outcome Measure for identification of Anti-Epileptic Drug side effects (SIDE-PRO)

Study Background

We are conducting a study at Cardiff University to develop a patient report questionnaire on the side effects of anti-epileptic drugs in adults with epilepsy and learning disability. We would like to help make it easier for professionals to find out what problems people with learning disabilities and epilepsy have with their medicine.

Although similar questionnaires are available for use in the general population, it is not clear whether these are appropriate for adults with a learning disability, and it may be difficult to spot side effects of drugs because of this.

We are also interested in whether side effects influence behaviour and day to day living.

It is hoped results will lead to better awareness and identification of anti-epileptic drug side effects in people with learning disabilities and epilepsy.

Options To Participate

The study has a number of stages including:

• participant and carer focus groups
• face to face interviews with the study team (home based)
• postal questionnaires.

We are currently on the focus group phase of the trial; however, we are recruiting for all stages.

Participants are welcome to take part in just one part or all parts of the study.

Participants

For this study, we are looking to recruit people who meet the following criteria:

• Live in the South Wales area
• Aged 18+
• Have a learning disability
• Have a diagnosis of epilepsy
• Are currently taking antiepileptic medication
• Have an identified carer who is also willing to take part
• Have capacity to consent to participate in the study.
• Have the ability to complete the study questionnaires in English (supported by a carer if required)

Carers

• Live in the South Wales area
• Aged 18+
• Carer for a participant meeting the inclusion criteria
• Able to complete study questionnaires

How To Take Part

If you would like further information about the study:

1. Please first read the “Participant Information Sheet (SIDE-PRO)” or the “Carer Information Sheet (SIDE-PRO)”.
2. If you are interested in taking part after reading the information sheet, email Andrea Meek or telephone +44(0)29 20687619

Your clinical care will not be affected in any way if you do or do not take part in this study. If you do decide to take part in the study, you are free to withdraw at any time.

Contact Us

SIDEPRO Study Team: Dr. Rachel McNamara, Dr. Lauren Copeland and Andrea Meek

For more information or to participate in the study, email Andrea Meek or telephone +44(0)29 20687619