Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland

ObjectivesThis study aimed to report the prevalence and clinical characteristics of adults with cerebral palsy (CP) in a geographically defined region of the UK.Design and settingCross-sectional study using the Northern Ireland Cerebral Palsy Register (NICPR).ParticipantsAll validated cases known to...

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Published in:BMJ open 2021-01, Vol.11 (1), p.e044614
Main Authors: McConnell, Karen, Livingstone, Emma, Perra, Oliver, Kerr, C
Format: Article
Language:English
Subjects:
Adult
adult neurology
Adults
Age
Cerebral palsy
Cerebral Palsy - epidemiology
Cross-Sectional Studies
Disability
Epidemiology
Female
Humans
Male
Mortality
Multiple sclerosis
Neurology
Northern Ireland - epidemiology
Ostomy
Parkinson's disease
Population Surveillance
Population-based studies
Pregnancy
Prevalence
rehabilitation medicine
Spasticity
Young Adult
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creator McConnell, Karen
Livingstone, Emma
Perra, Oliver
Kerr, C
description ObjectivesThis study aimed to report the prevalence and clinical characteristics of adults with cerebral palsy (CP) in a geographically defined region of the UK.Design and settingCross-sectional study using the Northern Ireland Cerebral Palsy Register (NICPR).ParticipantsAll validated cases known to the NICPR, born 1981–2001 and alive and resident in Northern Ireland at age 19 years were included.ResultsThe study included 1218 persons with CP aged 19–39 years, 46 of whom died in adulthood. The prevalence of CP was 2.38 per 1000. The majority of cases had spastic CP (n=1132/1218, 93%) and could walk (n=949/1218, 78%). Those that died in adulthood typically had bilateral spastic CP (n=39/46) and used a wheelchair (n=40/46).ConclusionThe prevalence of CP in adults is similar to other common neurological conditions such as multiple sclerosis and Parkinson’s disease. The needs of adults with CP vary widely with almost half having two or more associated impairments that may require multiprofessional and multiagency coordination. Results from this study can be used to inform transformation of health and care services for adults with CP.
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The prevalence of CP was 2.38 per 1000. The majority of cases had spastic CP (n=1132/1218, 93%) and could walk (n=949/1218, 78%). Those that died in adulthood typically had bilateral spastic CP (n=39/46) and used a wheelchair (n=40/46).ConclusionThe prevalence of CP in adults is similar to other common neurological conditions such as multiple sclerosis and Parkinson’s disease. The needs of adults with CP vary widely with almost half having two or more associated impairments that may require multiprofessional and multiagency coordination. Results from this study can be used to inform transformation of health and care services for adults with CP.</description><identifier>ISSN: 2044-6055</identifier><identifier>EISSN: 2044-6055</identifier><identifier>DOI: 10.1136/bmjopen-2020-044614</identifier><identifier>PMID: 33419918</identifier><language>eng</language><publisher>England: British Medical Journal Publishing Group</publisher><subject>Adult ; adult neurology ; Adults ; Age ; Cerebral palsy ; Cerebral Palsy - epidemiology ; Cross-Sectional Studies ; Disability ; Epidemiology ; Female ; Humans ; Male ; Mortality ; Multiple sclerosis ; Neurology ; Northern Ireland - epidemiology ; Ostomy ; Parkinson's disease ; Population Surveillance ; Population-based studies ; Pregnancy ; Prevalence ; rehabilitation medicine ; Spasticity ; Young Adult</subject><ispartof>BMJ open, 2021-01, Vol.11 (1), p.e044614</ispartof><rights>Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.</rights><rights>2021 Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ . Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. 2021</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b578t-ba3979d5423fe5d47a183259c0edf313007cd94e95ac5db79bcc898d41758e9f3</citedby><cites>FETCH-LOGICAL-b578t-ba3979d5423fe5d47a183259c0edf313007cd94e95ac5db79bcc898d41758e9f3</cites><orcidid>0000-0002-5221-9800</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/2476269837/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2476269837?pq-origsite=primo$$EHTML$$P50$$Gproquest$$Hfree_for_read</linktohtml><link.rule.ids>112,113,230,314,723,776,780,881,3180,25732,27528,27529,27903,27904,36991,36992,44569,53769,53771,55319,55328,74872,77340,77341,77342,77343,77347,77378,77406,77432</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33419918$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>McConnell, Karen</creatorcontrib><creatorcontrib>Livingstone, Emma</creatorcontrib><creatorcontrib>Perra, Oliver</creatorcontrib><creatorcontrib>Kerr, C</creatorcontrib><title>Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland</title><title>BMJ open</title><addtitle>BMJ Open</addtitle><addtitle>BMJ Open</addtitle><description>ObjectivesThis study aimed to report the prevalence and clinical characteristics of adults with cerebral palsy (CP) in a geographically defined region of the UK.Design and settingCross-sectional study using the Northern Ireland Cerebral Palsy Register (NICPR).ParticipantsAll validated cases known to the NICPR, born 1981–2001 and alive and resident in Northern Ireland at age 19 years were included.ResultsThe study included 1218 persons with CP aged 19–39 years, 46 of whom died in adulthood. The prevalence of CP was 2.38 per 1000. The majority of cases had spastic CP (n=1132/1218, 93%) and could walk (n=949/1218, 78%). Those that died in adulthood typically had bilateral spastic CP (n=39/46) and used a wheelchair (n=40/46).ConclusionThe prevalence of CP in adults is similar to other common neurological conditions such as multiple sclerosis and Parkinson’s disease. The needs of adults with CP vary widely with almost half having two or more associated impairments that may require multiprofessional and multiagency coordination. Results from this study can be used to inform transformation of health and care services for adults with CP.</description><subject>Adult</subject><subject>adult neurology</subject><subject>Adults</subject><subject>Age</subject><subject>Cerebral palsy</subject><subject>Cerebral Palsy - epidemiology</subject><subject>Cross-Sectional Studies</subject><subject>Disability</subject><subject>Epidemiology</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Mortality</subject><subject>Multiple sclerosis</subject><subject>Neurology</subject><subject>Northern Ireland - epidemiology</subject><subject>Ostomy</subject><subject>Parkinson's disease</subject><subject>Population Surveillance</subject><subject>Population-based studies</subject><subject>Pregnancy</subject><subject>Prevalence</subject><subject>rehabilitation medicine</subject><subject>Spasticity</subject><subject>Young Adult</subject><issn>2044-6055</issn><issn>2044-6055</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>9YT</sourceid><sourceid>PIMPY</sourceid><sourceid>DOA</sourceid><recordid>eNqNkkFv1DAQhSMEolXpL0BClrhwSWvHdhxfkFAF7UoVcICz5diTrldeO9hJ0f57vM2ytBwQucTyvPd5ZvSq6jXBF4TQ9rLfbuIIoW5wg2vMWEvYs-q0Kae6xZw_f3Q-qc5z3uDyMS45b15WJ5QyIiXpTqv4NY6z15OLoe51BovyNNsdigFNa0BjgnvtIRhAOlhkvAvOaF_u4-A8oDggbWc_ZfTTTWtkIEGf9nXt8w65gD7HVDgpoFUCXxCvqhdDqcH54X9Wff_08dvVTX375Xp19eG27rnoptIKlUJazho6ALdMaNLRhkuDwQ6UUIyFsZKB5Npw2wvZG9PJzjIieAdyoGfVauHaqDdqTG6r005F7dTDRUx3SqfJGQ9K9EQaJvoWmvJeeZiyshvdczkIybQsrPcLa5z7LVgDYSozPoE-rQS3VnfxXgkhu7YVBfDuAEjxxwx5UluXDfiyEIhzVg0TLW9xGbBI3_4l3cQ5hbKqB1XTyo7ugXRRmRRzTjAcmyFY7fOhDvlQ-3yoJR_F9ebxHEfP7zQUwcUiKO7_JF7-MRwb_ZfjFyG91p0</recordid><startdate>20210108</startdate><enddate>20210108</enddate><creator>McConnell, Karen</creator><creator>Livingstone, Emma</creator><creator>Perra, Oliver</creator><creator>Kerr, C</creator><general>British Medical Journal Publishing Group</general><general>BMJ Publishing Group LTD</general><general>BMJ Publishing Group</general><scope>9YT</scope><scope>ACMMV</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BTHHO</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K9-</scope><scope>K9.</scope><scope>KB0</scope><scope>M0R</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0002-5221-9800</orcidid></search><sort><creationdate>20210108</creationdate><title>Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland</title><author>McConnell, Karen ; 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The prevalence of CP was 2.38 per 1000. The majority of cases had spastic CP (n=1132/1218, 93%) and could walk (n=949/1218, 78%). Those that died in adulthood typically had bilateral spastic CP (n=39/46) and used a wheelchair (n=40/46).ConclusionThe prevalence of CP in adults is similar to other common neurological conditions such as multiple sclerosis and Parkinson’s disease. The needs of adults with CP vary widely with almost half having two or more associated impairments that may require multiprofessional and multiagency coordination. Results from this study can be used to inform transformation of health and care services for adults with CP.</abstract><cop>England</cop><pub>British Medical Journal Publishing Group</pub><pmid>33419918</pmid><doi>10.1136/bmjopen-2020-044614</doi><orcidid>https://orcid.org/0000-0002-5221-9800</orcidid><oa>free_for_read</oa></addata></record>
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subjects Adult
adult neurology
Adults
Age
Cerebral palsy
Cerebral Palsy - epidemiology
Cross-Sectional Studies
Disability
Epidemiology
Female
Humans
Male
Mortality
Multiple sclerosis
Neurology
Northern Ireland - epidemiology
Ostomy
Parkinson's disease
Population Surveillance
Population-based studies
Pregnancy
Prevalence
rehabilitation medicine
Spasticity
Young Adult
title Population-based study on the prevalence and clinical profile of adults with cerebral palsy in Northern Ireland
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