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Current Pediatric Research| Volume: 22
November 28-29, 2018 | Dubai, UAE
15th World Congress on
Pediatrics, Clinical Pediatrics and Nutrition
28th International Conference on
Nursing Practice
Joint Event
&
Nurses’ use of a defined competencies framework to support adults with Epilepsy and intellectual
disability-Findings from the EpAID study
Fiona Irvine
University of Birmingham, UK
The World Health Organisation defines intellectual disability
(ID) as “a significantly reduced ability to understand new
or complex information and to learn and apply new skills
(impaired intelligence). This results in a reduced ability to cope
independently (impaired social functioning), and begins before
adulthood, with a lasting effect on development”. Epilepsy is
themost commonmedical illness in people with IDs. Compared
to the general population with epilepsy, individuals with an
ID and epilepsy have an increased seizure frequency, higher
frequencies of multiple antiepileptic drug use and side effects,
higher treatment costs, higher rates of mortality and a greater
incidence of behavioural problems.
In the UK, Epilepsy Specialist Nurses (ESNs) with enhanced
expertise in the management of epilepsy, offer a range of
services to patients with epilepsy, including patient assessment,
medication management, ordering and interpreting
investigations and providing education, support and counselling
to patients and families. However, most people with ID and
epilepsy do not receive services from an ESN even though
anecdotal evidence suggests that ESNs may help to improve
outcomes and reduce the costs of care for adults with epilepsy
and an ID.
The Royal College of Nursing has developed a series of
competency frameworks for nurses, including the Learning
Disability Epilepsy Specialist Nurse Competency Framework,
that aims to improve outcomes for adults with an ID and
epilepsy. We set out to establish whether the development of
a nurse-led approach to managing epilepsy in adults with an
intellectual disability, basedon this RCNcompetency framework
improved outcomes and lowered costs of care for people with
epilepsy and ID.
We undertook a cluster randomised controlled trial to assess
the impact on costs and outcomes of the provision of learning
disability nurses working to the RCN competency framework.
The trial took place in 17 community ID clinical teams across
England, Scotland andWales and involved 312 adults with an ID
and epilepsy (the participants). Eight sites randomly allocated to
the intervention arm recruited 184 participants and nine sites
allocated to treatment as usual recruited 128 participants. After
completing baseline assessment of participants, we trained the
nurses in the intervention arm on the use of the competency
framework and they subsequently workedwith the participants
following the guidance outlined in the competency framework.
Nurses in the control arm, received minimal training and then
followed their existing management approach for participants.
All nurses in the study completed a daily diary in which they
recordedtheactivitiesthattheyundertookwiththeparticipants.
The trial intervention (or control) lasted aminimumof 24weeks
after which time; we followed up participants for a 4-week
period, when they completed a range of questionnaires and a
qualitative interview. We undertook an economic evaluation in
tandemwith the study.
Overall, the results of the trial indicated that, in terms of
clinical outcomes, the competency framework was no better
than treatment as usual. For those with a mild or moderate ID
the results suggested that use of the framework might have
been associated with a slight reduction in the severity of their
seizures, as noticed by somebody providing care for them. The
economic analysis suggested that, in general, the competency
framework intervention resulted in a small reduction in quality
of life but saved money.
The EpAID clinical trial is the first controlled trial to test the
possible benefits of a nurse-led intervention for epilepsy in
adults with an ID. It suggests that nurses with experience in
ID and epilepsy could be well placed to deliver or facilitate the
epilepsy management recommended for adults with an ID by
the relevant clinical guidelines.
Speaker Biography
Fiona Irvine qualified as a Registered Nurse from the Hammersmith Hospital School
of Nursing in 1984 and went on to work in Mid Wales as a District Nursing Sister and
latterly, a Macmillan Clinical Nurse Specialist in Palliative Care. During this time,
Fiona discovered her love of teaching and having completed her Master of Science
Degree in Health Promotion and Health Education, she took up her first academic post,
leading a specialist practice community nursing programme in North Wales. Whilst
working as a lecturer, following on from this work, Fiona became involved in several
funded research studies, which led to her securing her first professorial appointment
in 2007. Fiona held senior posts in universities in North Wales and the North West
of England before joining the University of Birmingham in March 2014 as Head of
Nursing. Since taking up the post, Fiona has been leading the reorganisation of nursing
and its relocation to the main building of the College of Medical and Dental Sciences.
e:
Fiona Irvine, Pediatrics and Clinical Pediatrics 2018
& Nursing Practice 2018, Volume 22
DOI: 10.4066/0971-9032-C2-005