Sangam: A Confluence of Knowledge Streams

Under representation of people with epilepsy and intellectual disability in research.

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dc.creator Shankar, R
dc.creator Rowe, C
dc.creator Van Hoorn, A
dc.creator Henley, W
dc.creator Laugharne, R
dc.creator Cox, D
dc.creator Pande, R
dc.creator Roy, A
dc.creator Sander, JW
dc.date 2021-05-23T10:50:57Z
dc.date 2018
dc.date.accessioned 2022-05-26T20:54:39Z
dc.date.available 2022-05-26T20:54:39Z
dc.identifier http://hdl.handle.net/10026.1/17195
dc.identifier 10.1371/journal.pone.0198261
dc.identifier 1932-6203
dc.identifier.uri http://localhost:8080/xmlui/handle/CUHPOERS/226764
dc.description PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
dc.format e0198261 - ?
dc.language eng
dc.language eng
dc.publisher United States
dc.relation E-ISSN:1932-6203
dc.rights Attribution-NonCommercial-NoDerivatives 4.0 International
dc.rights Attribution-NonCommercial-NoDerivatives 4.0 International
dc.rights Attribution-NonCommercial-NoDerivatives 4.0 International
dc.rights Attribution-NonCommercial-NoDerivatives 4.0 International
dc.rights http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.rights http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.rights http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.rights http://creativecommons.org/licenses/by-nc-nd/4.0/
dc.rights 9999-12-31
dc.rights Not known
dc.subject Biomedical Research
dc.subject Epilepsy
dc.subject Humans
dc.subject Intellectual Disability
dc.subject Periodicals as Topic
dc.title Under representation of people with epilepsy and intellectual disability in research.
dc.type Journal Article


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