The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers
•COVID-19 had minimal impact on pediatric epilepsy management.•Families managing epilepsy are generally adherent to CDC COVID-19 guidelines.•Obtaining medicine was challenging for those with public insurance during COVID-19.•The education of children with epilepsy has been compromised by COVID-19.•S...
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| Veröffentlicht in: | Epilepsy & behavior 2021-04, Vol.117, p.107855-107855, Article 107855 |
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| container_title | Epilepsy & behavior |
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| creator | Modi, Avani C. Patel, Anup D. Stevens, Jack Smith, Gigi Huszti, Heather Guilfoyle, Shanna M. Mara, Constance A. Schmidt, Matthew Wagner, Janelle L. |
| description | •COVID-19 had minimal impact on pediatric epilepsy management.•Families managing epilepsy are generally adherent to CDC COVID-19 guidelines.•Obtaining medicine was challenging for those with public insurance during COVID-19.•The education of children with epilepsy has been compromised by COVID-19.•Socialization in families of children with epilepsy is compromised by COVID-19.
We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status.
Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses.
Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance.
This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy. |
| doi_str_mv | 10.1016/j.yebeh.2021.107855 |
| format | Article |
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We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status.
Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses.
Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance.
This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.</description><identifier>ISSN: 1525-5050</identifier><identifier>EISSN: 1525-5069</identifier><identifier>DOI: 10.1016/j.yebeh.2021.107855</identifier><identifier>PMID: 33636530</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adjustment ; Adolescent ; Caregivers ; Child ; Children ; COVID-19 ; Distance learning ; Epilepsy - drug therapy ; Epilepsy - epidemiology ; Humans ; Pandemic ; Pandemics ; SARS-CoV-2 ; Seizures ; Self-management</subject><ispartof>Epilepsy & behavior, 2021-04, Vol.117, p.107855-107855, Article 107855</ispartof><rights>2021 Elsevier Inc.</rights><rights>Copyright © 2021 Elsevier Inc. All rights reserved.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c459t-a43d6e7fbcda8918a2b9515012e84c2c3e42a497e24ee1cdcac82728516cac5e3</citedby><cites>FETCH-LOGICAL-c459t-a43d6e7fbcda8918a2b9515012e84c2c3e42a497e24ee1cdcac82728516cac5e3</cites><orcidid>0000-0001-9313-1541 ; 0000-0002-8110-4367 ; 0000-0002-7580-3751</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://dx.doi.org/10.1016/j.yebeh.2021.107855$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>230,314,780,784,885,3550,27924,27925,45995</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33636530$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Modi, Avani C.</creatorcontrib><creatorcontrib>Patel, Anup D.</creatorcontrib><creatorcontrib>Stevens, Jack</creatorcontrib><creatorcontrib>Smith, Gigi</creatorcontrib><creatorcontrib>Huszti, Heather</creatorcontrib><creatorcontrib>Guilfoyle, Shanna M.</creatorcontrib><creatorcontrib>Mara, Constance A.</creatorcontrib><creatorcontrib>Schmidt, Matthew</creatorcontrib><creatorcontrib>Wagner, Janelle L.</creatorcontrib><title>The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers</title><title>Epilepsy & behavior</title><addtitle>Epilepsy Behav</addtitle><description>•COVID-19 had minimal impact on pediatric epilepsy management.•Families managing epilepsy are generally adherent to CDC COVID-19 guidelines.•Obtaining medicine was challenging for those with public insurance during COVID-19.•The education of children with epilepsy has been compromised by COVID-19.•Socialization in families of children with epilepsy is compromised by COVID-19.
We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status.
Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses.
Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance.
This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.</description><subject>Adjustment</subject><subject>Adolescent</subject><subject>Caregivers</subject><subject>Child</subject><subject>Children</subject><subject>COVID-19</subject><subject>Distance learning</subject><subject>Epilepsy - drug therapy</subject><subject>Epilepsy - epidemiology</subject><subject>Humans</subject><subject>Pandemic</subject><subject>Pandemics</subject><subject>SARS-CoV-2</subject><subject>Seizures</subject><subject>Self-management</subject><issn>1525-5050</issn><issn>1525-5069</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kcuO1DAQRS0EYh7wBUjISzZp_MxjARJqGBhppNkMbC13pTJxK4mD7W5o8fM400MLNqxcqjr3VsmXkFecrTjj5dvt6oAb7FeCCZ47Va31E3LOtdCFZmXz9FRrdkYuYtwyxrmW_Dk5k7KUpZbsnPy665HO8QC9jx6cHagbZwuJ-o6ub79dfyx4Q3-41LuJpox2LsREo_tJRz-lPi7c0p_t1OLogPqJHvwu9Q8iirMbMNvTPF44FyjYgPdujyG-IM86O0R8-fhekq9Xn-7WX4qb28_X6w83BSjdpMIq2ZZYdRtobd3w2opNo7lmXGCtQIBEJaxqKhQKkUMLFmpRiVrzMpca5SV5f_Sdd5sRW8ApBTuYObjRhoPx1pl_J5Przb3fm5pJLVSZDd48GgT_fYcxmdFFwGGwE_pdNEI1SrJ8UpVReUQh-BgDdqc1nJklNrM1D7GZJTZzjC2rXv994UnzJ6cMvDsCmP9p7zCYCA4nwNYFhGRa7_674Dftsqxz</recordid><startdate>20210401</startdate><enddate>20210401</enddate><creator>Modi, Avani C.</creator><creator>Patel, Anup D.</creator><creator>Stevens, Jack</creator><creator>Smith, Gigi</creator><creator>Huszti, Heather</creator><creator>Guilfoyle, Shanna M.</creator><creator>Mara, Constance A.</creator><creator>Schmidt, Matthew</creator><creator>Wagner, Janelle L.</creator><general>Elsevier Inc</general><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>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0001-9313-1541</orcidid><orcidid>https://orcid.org/0000-0002-8110-4367</orcidid><orcidid>https://orcid.org/0000-0002-7580-3751</orcidid></search><sort><creationdate>20210401</creationdate><title>The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers</title><author>Modi, Avani C. ; Patel, Anup D. ; Stevens, Jack ; Smith, Gigi ; Huszti, Heather ; Guilfoyle, Shanna M. ; Mara, Constance A. ; Schmidt, Matthew ; Wagner, Janelle L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c459t-a43d6e7fbcda8918a2b9515012e84c2c3e42a497e24ee1cdcac82728516cac5e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Adjustment</topic><topic>Adolescent</topic><topic>Caregivers</topic><topic>Child</topic><topic>Children</topic><topic>COVID-19</topic><topic>Distance learning</topic><topic>Epilepsy - drug therapy</topic><topic>Epilepsy - epidemiology</topic><topic>Humans</topic><topic>Pandemic</topic><topic>Pandemics</topic><topic>SARS-CoV-2</topic><topic>Seizures</topic><topic>Self-management</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Modi, Avani C.</creatorcontrib><creatorcontrib>Patel, Anup D.</creatorcontrib><creatorcontrib>Stevens, Jack</creatorcontrib><creatorcontrib>Smith, Gigi</creatorcontrib><creatorcontrib>Huszti, Heather</creatorcontrib><creatorcontrib>Guilfoyle, Shanna M.</creatorcontrib><creatorcontrib>Mara, Constance A.</creatorcontrib><creatorcontrib>Schmidt, Matthew</creatorcontrib><creatorcontrib>Wagner, Janelle L.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Epilepsy & behavior</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Modi, Avani C.</au><au>Patel, Anup D.</au><au>Stevens, Jack</au><au>Smith, Gigi</au><au>Huszti, Heather</au><au>Guilfoyle, Shanna M.</au><au>Mara, Constance A.</au><au>Schmidt, Matthew</au><au>Wagner, Janelle L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers</atitle><jtitle>Epilepsy & behavior</jtitle><addtitle>Epilepsy Behav</addtitle><date>2021-04-01</date><risdate>2021</risdate><volume>117</volume><spage>107855</spage><epage>107855</epage><pages>107855-107855</pages><artnum>107855</artnum><issn>1525-5050</issn><eissn>1525-5069</eissn><abstract>•COVID-19 had minimal impact on pediatric epilepsy management.•Families managing epilepsy are generally adherent to CDC COVID-19 guidelines.•Obtaining medicine was challenging for those with public insurance during COVID-19.•The education of children with epilepsy has been compromised by COVID-19.•Socialization in families of children with epilepsy is compromised by COVID-19.
We assessed the impact of COVID-19 on children with epilepsy and their families, focusing on epilepsy management, family routines, learning, and adherence to Centers for Disease Control and Prevention (CDC) pandemic guidelines (e.g., social distancing, mask wearing) within the first six months of the pandemic. Group differences in COVID-19 impact on families were also examined based on race and ethnicity, being medically and/or geographically underserved, and insurance status.
Participants (n = 131) included children with epilepsy and their families from two clinical trials. The Impact of COVID-19 on Pediatric Epilepsy Management (ICPEM) measure was developed and administered to caregivers online from April 2020 to September 2020 across four large pediatric hospitals. Administration of the ICPEM occurred both during routine study assessments and an additional acute time point to obtain information early in the pandemic (e.g., April and May 2020). Descriptive statistics and t-tests were used for analyses.
Data indicate minor to moderate impact of COVID-19 on pediatric epilepsy management. Caregivers of children with epilepsy reported the most impact on education and social functioning. Adherence to CDC guidelines was reported to be high. Those having public insurance reported greater difficulties obtaining daily anti-seizure medications compared to those with private insurance.
This study presents important initial data regarding the impact of COVID-19 epilepsy management and daily functioning in children with epilepsy and their families. While the acute impact of COVID-19 restrictions appear to be mild to moderate, it is unclear what the long-term impact of the pandemic will be on families of children with epilepsy.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>33636530</pmid><doi>10.1016/j.yebeh.2021.107855</doi><tpages>1</tpages><orcidid>https://orcid.org/0000-0001-9313-1541</orcidid><orcidid>https://orcid.org/0000-0002-8110-4367</orcidid><orcidid>https://orcid.org/0000-0002-7580-3751</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | Epilepsy & behavior, 2021-04, Vol.117, p.107855-107855, Article 107855 |
| issn | 1525-5050 1525-5069 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_8035246 |
| source | MEDLINE; Access via ScienceDirect (Elsevier) |
| subjects | Adjustment Adolescent Caregivers Child Children COVID-19 Distance learning Epilepsy - drug therapy Epilepsy - epidemiology Humans Pandemic Pandemics SARS-CoV-2 Seizures Self-management |
| title | The psychosocial impact of COVID-19 within the first six months of the pandemic on youth with epilepsy and their caregivers |
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