Improving outcomes in adults with epilepsy and intellectual disability EpAID using a nurse led intervention: study protocol for a cluster randomised controlled trial.Report as inadecuate


Improving outcomes in adults with epilepsy and intellectual disability EpAID using a nurse led intervention: study protocol for a cluster randomised controlled trial.


Improving outcomes in adults with epilepsy and intellectual disability EpAID using a nurse led intervention: study protocol for a cluster randomised controlled trial. - Download this document for free, or read online. Document in PDF available to download.

Publication Date: 2016-06-24

Journal Title: Trials

Publisher: BioMed Central

Volume: 17

Issue: 297

Language: English

Type: Article

This Version: VoR

Metadata: Show full item record

Citation: Ring, H., Gilbert, N., Hook, R., Platt, A., Smith, C., Irvine, F., Donaldson, C., et al. (2016). Improving outcomes in adults with epilepsy and intellectual disability (EpAID) using a nurse led intervention: study protocol for a cluster randomised controlled trial

Trials, 17 (297)https://doi.org/10.1186/s13063-016-1429-7

Description: This is the final version of the article. It first appeared from BioMed Central via https://doi.org/10.1186/s13063-016-1429-7

Abstract: Background: In adults with intellectual disability (ID) and epilepsy there are suggestions that improvements in management may follow introduction of epilepsy nurse led care. However, this has not been tested in a definitive clinical trial and results cannot be generalised from general population studies as epilepsy tends to be more severe and to involve additional clinical comorbidities in adults with ID. This trial investigates whether nurses with expertise in epilepsy and ID, working proactively to a clinically defined role, can improve clinical and quality of life outcomes in the management of epilepsy within this population, compared to treatment as usual. The trial also aims to establish whether any perceived benefits represent good value for money. Methods/Design: The EpAID clinical trial is a two-arm cluster randomised controlled trial of nurse led epilepsy management versus treatment as usual. This trial aims to obtain follow-up data from 320 participants with ID and drug resistant epilepsy. Participants are randomly assigned either to a ‘treatment as usual’ control or a ‘defined epilepsy nurse role’ active arm, according to the cluster site at which they are treated. The active intervention utilises the recently developed Learning Disability Epilepsy Specialist Nurse Competency Framework for adults with ID. Participants undergo four weeks baseline data collection, followed by a minimum of 20 weeks intervention (novel treatment or treatment as usual), followed by four weeks follow-up data collection. The primary outcome is seizure severity, including associated injuries and the level of distress manifest by the patient in the preceding four weeks. Secondary outcomes include cost-utility analysis, carer-strain, seizure frequency and side-effects. Descriptive measures include demographic and clinical descriptors of participants and clinical services in which they receive their epilepsy management. Qualitative study of clinical interactions and semi-structured interviews with clinicians and participants’ carers are also undertaken. Discussion: The EpAID clinical trial is the first cluster randomised controlled trial to test possible benefits of a nurse led intervention in adults with epilepsy and ID. This research will have important implications for ID and epilepsy services. The challenges of undertaking such a trial in this population, and the approaches to meeting these are discussed.

Sponsorship: Cambridgeshire and Peterborough NHS Foundation Trust

University of Cambridge, Research and Development Department

Embargo Lift Date: 2100-01-01

Identifiers:

External DOI: https://doi.org/10.1186/s13063-016-1429-7

This record's URL: https://www.repository.cam.ac.uk/handle/1810/256230



Rights: Attribution 4.0 International

Licence URL: http://creativecommons.org/licenses/by/4.0/





Author: Ring, HowardGilbert, NakitaHook, RoxannePlatt, AdamSmith, ChristopherIrvine, FionaDonaldson, CamJones, ElizabethKelly, JoannaMande

Source: https://www.repository.cam.ac.uk/handle/1810/256230



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