Under representation of people with epilepsy and intellectual disability in research
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 exami...
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| Veröffentlicht in: | PloS one 2018-06, Vol.13 (6), p.e0198261-e0198261 |
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| creator | Shankar, Rohit Rowe, Charles Van Hoorn, Alje Henley, William Laugharne, Richard Cox, David Pande, Raj Roy, Ashok Sander, Josemir W |
| description | 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. |
| doi_str_mv | 10.1371/journal.pone.0198261 |
| format | Article |
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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.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0198261</identifier><identifier>PMID: 29927966</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Analysis ; Biology and Life Sciences ; Biomedical Research ; Care and treatment ; Children ; Comorbidity ; Complications and side effects ; Conferences ; Data processing ; Documents ; Epilepsy ; Health care costs ; Humans ; Inequality ; Intellectual disabilities ; Intellectual Disability ; Medicine and Health Sciences ; Morbidity ; Mortality ; Neurology ; Pediatrics ; Periodicals as Topic ; Population ; Research and Analysis Methods ; Researchers ; Risk factors ; Social Sciences</subject><ispartof>PloS one, 2018-06, Vol.13 (6), p.e0198261-e0198261</ispartof><rights>COPYRIGHT 2018 Public Library of Science</rights><rights>2018 Shankar et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2018 Shankar et al 2018 Shankar et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-5100fdf3d6cbe08180f53455880f04cc44211b9557e361ff6ea7d087fdae63be3</citedby><cites>FETCH-LOGICAL-c692t-5100fdf3d6cbe08180f53455880f04cc44211b9557e361ff6ea7d087fdae63be3</cites><orcidid>0000-0002-1183-6933</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6013187/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6013187/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,2095,2914,23846,27903,27904,53769,53771,79346,79347</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/29927966$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Ginsberg, Stephen D</contributor><creatorcontrib>Shankar, Rohit</creatorcontrib><creatorcontrib>Rowe, Charles</creatorcontrib><creatorcontrib>Van Hoorn, Alje</creatorcontrib><creatorcontrib>Henley, William</creatorcontrib><creatorcontrib>Laugharne, Richard</creatorcontrib><creatorcontrib>Cox, David</creatorcontrib><creatorcontrib>Pande, Raj</creatorcontrib><creatorcontrib>Roy, Ashok</creatorcontrib><creatorcontrib>Sander, Josemir W</creatorcontrib><title>Under representation of people with epilepsy and intellectual disability in research</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>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.</description><subject>Analysis</subject><subject>Biology and Life Sciences</subject><subject>Biomedical Research</subject><subject>Care and treatment</subject><subject>Children</subject><subject>Comorbidity</subject><subject>Complications and side effects</subject><subject>Conferences</subject><subject>Data processing</subject><subject>Documents</subject><subject>Epilepsy</subject><subject>Health care costs</subject><subject>Humans</subject><subject>Inequality</subject><subject>Intellectual disabilities</subject><subject>Intellectual Disability</subject><subject>Medicine and Health Sciences</subject><subject>Morbidity</subject><subject>Mortality</subject><subject>Neurology</subject><subject>Pediatrics</subject><subject>Periodicals as Topic</subject><subject>Population</subject><subject>Research and Analysis Methods</subject><subject>Researchers</subject><subject>Risk 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D</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Under representation of people with epilepsy and intellectual disability in research</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2018-06-21</date><risdate>2018</risdate><volume>13</volume><issue>6</issue><spage>e0198261</spage><epage>e0198261</epage><pages>e0198261-e0198261</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><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.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>29927966</pmid><doi>10.1371/journal.pone.0198261</doi><tpages>e0198261</tpages><orcidid>https://orcid.org/0000-0002-1183-6933</orcidid><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; Public Library of Science (PLoS) Journals Open Access; EZB-FREE-00999 freely available EZB journals; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Analysis Biology and Life Sciences Biomedical Research Care and treatment Children Comorbidity Complications and side effects Conferences Data processing Documents Epilepsy Health care costs Humans Inequality Intellectual disabilities Intellectual Disability Medicine and Health Sciences Morbidity Mortality Neurology Pediatrics Periodicals as Topic Population Research and Analysis Methods Researchers Risk factors Social Sciences |
| title | Under representation of people with epilepsy and intellectual disability in research |
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