Research Article: Under representation of people with epilepsy and intellectual disability in research

Date Published: June 21, 2018

Publisher: Public Library of Science

Author(s): Rohit Shankar, Charles Rowe, Alje Van Hoorn, William Henley, Richard Laugharne, David Cox, Raj Pande, Ashok Roy, Josemir W. Sander, Stephen D Ginsberg.

http://doi.org/10.1371/journal.pone.0198261

Abstract

One quarter of people with epilepsy have an intellectual disability (ID) and one fifth of people with an ID have epilepsy. Both conditions are associated with higher levels of morbidity, stigma and premature mortality. There have been calls for action to promote more research in this group. We examined if this group are represented adequately in current research.

The proportion of research output in epilepsy conferences and publications relevant to ID and the proportion in ID conferences and publications on epilepsy for 2015–2016 were identified. As the percentage of children in the population with epilepsy is 17%, research output of this group was compared with the ID group. Recognised material was classified based on whether it applied to general epilepsy/ID research, children with epilepsy or people with epilepsy and ID. Data was analysed to determine the proportion of presented research specifically identifying people with epilepsy and ID.

Fewer than 2% of presentations at epilepsy conferences specifically related to the ID and epilepsy group compared to 15% relating to children with epilepsy. Similarly only 1.4% of the research presented at major ID conferences related to those with people with epilepsy and ID. About 5% of published research in the field of epilepsy related to those with ID as compared with 24% for children with epilepsy. Twelve percent of published research in ID specifically identified epilepsy.

Publications and conference presentations, on the population with epilepsy and comorbid ID is under-represented. Increased research in this area might assist in improving the quality of care for this relatively neglected group.

Partial Text

Approximately 20% of those with Intellectual Disability (ID) have comorbid epilepsy [1, 2]. The incidence of epilepsy rises with increasing severity of ID [1, 2]. Estimates also consistently find that 25% of all people with epilepsy have ID [3, 4, 5, 6]. Epilepsy management represents an important healthcare need for many of those with ID. For over a decade now the leading UK charity MENCAP has highlighted the continued inequality in healthcare provision to those with ID [7]. The inadequate treatment of people with epilepsy and ID may lead to premature mortality. This has been highlighted in a recent call for action by international epilepsy experts who have discussed failures in recognising and preventing epilepsy related mortality in this population [8]. Lack of research on preventive interventions was one area where action was called for, as generating a suitable evidence base may assist in addressing the inequality of healthcare provision. To date, little effort seems to have been put into identifying or quantifying this inequality.

We aimed to examine the following research questions:

We examined all major US, UK, and European conferences for either ID or epilepsy that took place in 2015 and 2016. Printed or digital conference programmes were obtained for analysis (S1 Appendix).

There were only 2 instances of disagreement between the 2 reviewers. Both instances were added to the general epilepsy group. It is unlikely, given the small numbers of disagreements, that this would have had any major bias on the final outcomes.

Our results build a picture of significant under-representation of people with epilepsy and ID in recent research. All of the major epilepsy conferences analysed showed a greater and more equitable proportion of research in children with epilepsy compared with people with ID.

Manual classification of conference material into different categories is open to error due to the subjectivity of this system. There is also a chance small amounts of material could have been misclassified or counted inaccurately especially as ID researchers doing the searches could be more sympathetic to people with ID. To minimise these limitations categorization was done independently by the two researchers.

People with ID and epilepsy appear to be under-represented in both epilepsy and ID research fields respectively. Our analysis suggests that publications and conference presentations on people with ID and epilepsy are under-represented.

 

Source:

http://doi.org/10.1371/journal.pone.0198261

 

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