Epilepsy is more prevalent in people with learning disabilities than in the general population, and is linked to increased mortality and more reliance on health services.
Epilepsy has been found to be the most frequently presented health problem for people with learning disabilities in primary care (Straetmans et al, 2007) and people with learning disabilities and epilepsy present to secondary care more frequently than people with learning disabilities alone (Morgan et al, 2003; Glover and Evison 2013; Balogh et al, 2010).
The confidential inquiry into premature deaths of people with learning disabilities (CIPOLD) found a greater proportion of people with learning disabilities died as a result of epilepsy than in the general population and that in some cases NICE guidelines relating to the management of epilepsy were not adhered to. These findings highlight the importance of service responses to people with learning disabilities and epilepsy.
Despite this, there has been little research into services for people with learning disabilities and epilepsy. This blog reviews a paper by Robertson et al (2015) published in JARID about the findings of their systematic review into service responses to people with intellectual disabilities with epilepsy.
The authors performed electronic searches on a variety of databases including Medline, ClinicalTrials.gov and Clinical Trials Gateway. Reference lists of articles, authors personal collections and network contacts (such as IASSIDD) were also used as a means of searching for relevant articles. In order to be included, articles had to be peer reviewed, in English, published from 1990 onwards, a primary research, service audit or evaluation and their sample had to be entirely made up of people with learning disabilities or where 50% or more have learning disabilities or for mixed samples, results had to be disaggregated for people with learning disabilities.
The review was focused on service responses to the general population of people with learning disabilities and epilepsy, so excluded research focused on specific syndromes and excluded research on the effectiveness of treatments for epilepsy as previous research has taken place in that area.
Thirty five articles met the criteria for inclusion. Most of the articles were based on quantitative surveys (n=12), qualitative methods (n=6), and audits (n=5).
A total of fourteen themes were identified using an iterative process. The authors presented a “narrative summary” of the very broad information identified in the studies under these themes, which is summarised below:
- Service provision/configuration – studies showed a lack of comprehensive involvement by specialist services, for example with regional variation occurring as a result of whether there was a consultant with a specialist interest in the learning disabilities field.
- The impact of service setting – a persons living situation was found to impact on elements of their care, for example those in residential care were found to be more likely to have a seizure diary.
- Epilepsy reviews – studies showed the majority (71-81%) of people with learning disabilities had had an epilepsy review in the past 12 months.
- Epilepsy care plans – the authors found very little research about epilepsy care plans. However, two studies showed 60-65% of people had an epilepsy care plan.
- Investigations – studies highlighted poor access to some investigations such as neuro-imaging, MRI or CT scans for people with learning disabilities.
- Seizure diaries – the majority of people with learning disabilities were found to keep a seizure diary (83-93%), with those in residential care more likely to keep one.
- Medication adherence – studies showed medication adherence varied by setting, with those in family homes more likely to be non-adherent to AEDs.
- Management by proxy – the authors suggest people with learning disabilities may be disadvantaged by a lack of self-advocacy. Studies suggested non-paid carers were found to give a better account of a patients history in a multidisciplinary specialist epilepsy clinic.
- Risk assessment – the authors found little research regarding risk assessment for people with learning disabilities.
- Managing prolonged or serious seizures (rescue medication) – whilst many people with learning disabilities lived in settings that had access to rescue medication, studies showed there was often a lack of training for carers or family members on how to administer the medication.
- Educating people with intellectual disabilities about their epilepsy – the authors found little research regarding this, but suggested more education may help ensure medication compliance and prevent false beliefs about epilepsy.
- Evaluations of initiatives in services – studies reviewed included a number of initiatives such as psychiatric care for people with learning disabilities, care plans, information booklets and decision trees. The benefits of these initiatives included reduced seizure frequency and reduced polypharmacy.
- Prescribing practices – polypharmacy was found to be common, with variations including different medications given in NHS and non-NHS services.
- Views of families, carers or professionals regarding services – expectations of the medical profession were highlighted as being lower in terms of seizure freedom for people with learning disabilities, family members reported distress at the price paid in side effects to gain seizure control, and the authors found a need for access to more specialist expertise and experience.
The authors conclude that “research into service responses to epilepsy in people with intellectual disabilities is at an embryonic stage” and that further research is required to develop their findings. Their review indicates a high level of variation in service responses to people with learning disabilities and epilepsy, and the need for further research to understand these variations.
Strengths and limitations
The authors outline their methods, including a comprehensive table detailing each of the studies included in the review with descriptions of design, sample, measures and results. This enables the reader to understand the nature of the studies included, and perhaps it would have been helpful to also indicate which themes were identified in each of the studies.
The studies reviewed and themes identified by the authors of this paper were very broad indeed. Despite the authors broad inclusion criteria, no randomised controlled trials (RCTs) or intervention studies with robust designs were identified. As a result, no formal quality assessment of the literature was undertaken and all were included regardless. Also as a result of the broad inclusion criteria, no meta-analysis was conducted as it wasn’t possible to compare results due to the wide range of different methods identified.
As the authors highlight, the review did not include studies about service responses to epilepsy in general which may have included information applicable to people with learning disabilities. The majority of the studies included in the review were from the United Kingdom, with little information about services responses outside of the UK and no information from low and middle income countries. Further, some of the studies date back to the 1990s when service delivery models and responses may have been different, although the authors have been careful to signal when these older studies have been referred to.
Despite high prevalence of epilepsy amongst people with learning disabilities and the importance of service responses for this group, there has been very little research in this area.
The studies included in this review highlight variations in service response to people with learning disabilities and epilepsy, which might impact on a persons access to specialists and specialist care, the medications they might receive, and whether they would receive rescue medication administered by someone who has been adequately trained for example.
The authors conclude that further research is required to understand variation in service responses for people with learning disabilities and epilepsy, and to improve the quality of care available and received by people with learning disabilities and epilepsy.
Robertson J, Baines S, Emerson E, and Hatton C (2015). Service responses to people with intellectual disabilities and epilepsy: A systematic review. [Abstract]
Heslop P, Blair P, Fleming P, Hoghton M, Marriott A, and Russ L (2013). Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): Final report.
Balogh R, Brownell M, Ouellette-Kuntz H, and Colantonio A (2010). Hospitalisation rates for ambulatory care sensitive conditions for persons with and without an intellectual disability- a population perspective. [Abstract]
Morgan C, Baxter H, and Kerr M (2003). Prevalence of epilepsy and associated health service utilization and mortality among patients with intellectual disability. American Journal of Mental Retardation. [Abstract]
Straetmans J, Lantman-de Valk H, Schellevis F, and Dinant G (2007). Health problems of people with intellectual disabilities: the impact for general practice. British Journal of General Practice. [Abstract]