Wordless intervention for epilepsy in learning disabilities (WIELD): protocol for a randomised controlled feasibility study of the Books Beyond Words intervention

Durand, Marie-Anne, Gates, Bob, Parkes, Georgina, Zia, Asif, Friedli, Karin, Barton, Garry, Ring, Howard, Oostendorp, Linda and Wellsted, David (2014) Wordless intervention for epilepsy in learning disabilities (WIELD): protocol for a randomised controlled feasibility study of the Books Beyond Words intervention. Trials, 15 (1).

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Abstract

Background: Epilepsy is the most common neurological problem that affects people with learning disabilities. The
high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management
of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for
epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life.
Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and
acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books
Beyond Words booklet for epilepsy.
Methods/Design: We will use a two-arm, single-centre randomized controlled feasibility design, over a 20-month
period, across five epilepsy clinics in Hertfordshire, United Kingdom. We will recruit 40 eligible adults with learning
disabilities and a confirmed diagnosis of epilepsy and will randomize them to use either the Books Beyond Words
booklet plus usual care (intervention group) or to receive routine information and services (control group). We will
collect quantitative data about the number of eligible participants, number of recruited participants, demographic
data, discontinuation rates, variability of the primary outcome measure (quality of life: Epilepsy and Learning
Disabilities Quality of Life scale), seizure severity, seizure control, intervention’s patterns of use, use of other
epilepsy-related information, resource use and the EQ-5D-5L health questionnaire. We will also gather qualitative
data about the feasibility and acceptability of the study procedures and the Books Beyond Words booklet. Ethical
approval for this study was granted on 28 April 2014, by the Wales Research Ethics Committee 5. Recruitment
began on 1 July 2014.
Discussion: The outcomes of this feasibility study will be used to inform the design and methodology of a
definitive study, adequately powered to determine the impact of the Books Beyond Words intervention to improve
the management of epilepsy in people with learning disabilities.

Item Type: Article
Uncontrolled Keywords: Epilepsy, Learning disability, Intervention, Feasibility trial, Clinical protocol
Subjects: Medicine and health > Nursing
Depositing User: Bob Gates
Date Deposited: 20 Jun 2016 15:12
Last Modified: 04 Aug 2016 09:48
URI: http://repository.uwl.ac.uk/id/eprint/2654

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