Parent‐ and Patient‐ Validated Content for Pediatric Epilepsy Quality‐of‐Life Assessment
Purpose: The purpose of this study was to assess the parent‐ and patient‐validated content of quality‐of‐life measurement for use in children with epilepsy. Methods: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about livi...
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| Veröffentlicht in: | Epilepsia (Copenhagen) 2000-11, Vol.41 (11), p.1474-1484 |
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| creator | Arunkumar, G. Wyllie, E. Kotagal, P. Ong, H. T. Gilliam, F. |
| description | Purpose: The purpose of this study was to assess the parent‐ and patient‐validated content of quality‐of‐life measurement for use in children with epilepsy.
Methods: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 years of age (mean, 10 years) and identified at the outpatient clinic or during hospital stay. To minimize investigator bias, parents and children listed their concerns in a private setting without staff involvement.
Results: Twenty‐six distinct domains were generated by the parents and children. Concerns listed by more than 20 of parents included medication adverse effects (58), cognitive effects of epilepsy (46), prospects for the future (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), brain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by more than 20 of children included social problems (35), cognitive effects of epilepsy (29), driving (29), sports (27), medication adverse effects (25), and schooling (21). Concerns ranked by children as most important included issues related to medication adverse effects (13), cognitive effects of epilepsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizures (6), injury (6), and dislike of hospital visits (6).
Conclusion: The effect of epilepsy on health‐related quality of life in pediatric patients is defined by a limited number of domains. A 20‐item inventory was chosen from the 26 domains generated by the parents and children. Our study provides insight into parents' and children's perception of seizures and the impact of epilepsy on everyday life. |
| doi_str_mv | 10.1111/j.1528-1157.2000.tb00125.x |
| format | Article |
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Methods: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 years of age (mean, 10 years) and identified at the outpatient clinic or during hospital stay. To minimize investigator bias, parents and children listed their concerns in a private setting without staff involvement.
Results: Twenty‐six distinct domains were generated by the parents and children. Concerns listed by more than 20 of parents included medication adverse effects (58), cognitive effects of epilepsy (46), prospects for the future (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), brain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by more than 20 of children included social problems (35), cognitive effects of epilepsy (29), driving (29), sports (27), medication adverse effects (25), and schooling (21). Concerns ranked by children as most important included issues related to medication adverse effects (13), cognitive effects of epilepsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizures (6), injury (6), and dislike of hospital visits (6).
Conclusion: The effect of epilepsy on health‐related quality of life in pediatric patients is defined by a limited number of domains. A 20‐item inventory was chosen from the 26 domains generated by the parents and children. Our study provides insight into parents' and children's perception of seizures and the impact of epilepsy on everyday life.</description><identifier>ISSN: 0013-9580</identifier><identifier>EISSN: 1528-1167</identifier><identifier>DOI: 10.1111/j.1528-1157.2000.tb00125.x</identifier><identifier>PMID: 11077463</identifier><identifier>CODEN: EPILAK</identifier><language>eng</language><publisher>Oxford, UK: Blackwell Publishing Ltd</publisher><subject>Adolescent ; Adult ; Ambulatory Care ; Attitude to Health ; Biological and medical sciences ; Child ; Child, Preschool ; Children ; Epilepsy ; Epilepsy - diagnosis ; Epilepsy - psychology ; Female ; Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy ; Health Status Indicators ; Hospitalization ; Humans ; Infant ; Male ; Medical sciences ; Nervous system (semeiology, syndromes) ; Neurology ; Parents - psychology ; Quality of Life - psychology ; Quality‐of‐life measures ; Reproducibility of Results ; Sickness Impact Profile</subject><ispartof>Epilepsia (Copenhagen), 2000-11, Vol.41 (11), p.1474-1484</ispartof><rights>2001 INIST-CNRS</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5114-cccd5d448105d6e3e099e0aae0cd1c250f83aeaa86b8434072e9f92fa5fff39e3</citedby><cites>FETCH-LOGICAL-c5114-cccd5d448105d6e3e099e0aae0cd1c250f83aeaa86b8434072e9f92fa5fff39e3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fj.1528-1157.2000.tb00125.x$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fj.1528-1157.2000.tb00125.x$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,780,784,1417,1433,27924,27925,45574,45575,46409,46833</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=796211$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/11077463$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Arunkumar, G.</creatorcontrib><creatorcontrib>Wyllie, E.</creatorcontrib><creatorcontrib>Kotagal, P.</creatorcontrib><creatorcontrib>Ong, H. T.</creatorcontrib><creatorcontrib>Gilliam, F.</creatorcontrib><title>Parent‐ and Patient‐ Validated Content for Pediatric Epilepsy Quality‐of‐Life Assessment</title><title>Epilepsia (Copenhagen)</title><addtitle>Epilepsia</addtitle><description>Purpose: The purpose of this study was to assess the parent‐ and patient‐validated content of quality‐of‐life measurement for use in children with epilepsy.
Methods: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 years of age (mean, 10 years) and identified at the outpatient clinic or during hospital stay. To minimize investigator bias, parents and children listed their concerns in a private setting without staff involvement.
Results: Twenty‐six distinct domains were generated by the parents and children. Concerns listed by more than 20 of parents included medication adverse effects (58), cognitive effects of epilepsy (46), prospects for the future (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), brain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by more than 20 of children included social problems (35), cognitive effects of epilepsy (29), driving (29), sports (27), medication adverse effects (25), and schooling (21). Concerns ranked by children as most important included issues related to medication adverse effects (13), cognitive effects of epilepsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizures (6), injury (6), and dislike of hospital visits (6).
Conclusion: The effect of epilepsy on health‐related quality of life in pediatric patients is defined by a limited number of domains. A 20‐item inventory was chosen from the 26 domains generated by the parents and children. Our study provides insight into parents' and children's perception of seizures and the impact of epilepsy on everyday life.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Ambulatory Care</subject><subject>Attitude to Health</subject><subject>Biological and medical sciences</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Children</subject><subject>Epilepsy</subject><subject>Epilepsy - diagnosis</subject><subject>Epilepsy - psychology</subject><subject>Female</subject><subject>Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy</subject><subject>Health Status Indicators</subject><subject>Hospitalization</subject><subject>Humans</subject><subject>Infant</subject><subject>Male</subject><subject>Medical sciences</subject><subject>Nervous system (semeiology, syndromes)</subject><subject>Neurology</subject><subject>Parents - psychology</subject><subject>Quality of Life - psychology</subject><subject>Quality‐of‐life measures</subject><subject>Reproducibility of Results</subject><subject>Sickness Impact Profile</subject><issn>0013-9580</issn><issn>1528-1167</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2000</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqVkcGO0zAQhi0EYruFV0ARSNwSPLEdJ1zQqirLSpUoEnA1U3sspUqTYqfa7Y1H4Bl5Ehw1giPCB1sef_949P-MvQReQFpv9gWoss4BlC5Kznkx7jiHUhUPj9hifqr0Y7ZIVZE3quZX7DrGfUJ1pcVTdgXAtZaVWLBvWwzUj79-_Mywd9kWx3a-fsWudTiSy1ZDP6Zi5oeQbcm1OIbWZutj29ExnrNPp0SO56QZfNo2rafsJkaK8ZBUz9gTj12k5_O5ZF_erz-vPuSbj7d3q5tNbhWAzK21Tjkpa-DKVSSINw1xROLWgS0V97VAQqyrXS2F5LqkxjelR-W9Fw2JJXt96XsMw_cTxdEc2mip67Cn4RSNLiUI3fB_glCDUpNzS_b2AtowxBjIm2NoDxjOBriZgjB7M7ltpiDMFISZgzAPSfxi_uW0O5D7K52dT8CrGcBosfMBe9vGP5xuqhKmGd5dqPtk9vk_BjDr7R1ILcVvJq2pYQ</recordid><startdate>200011</startdate><enddate>200011</enddate><creator>Arunkumar, G.</creator><creator>Wyllie, E.</creator><creator>Kotagal, P.</creator><creator>Ong, H. T.</creator><creator>Gilliam, F.</creator><general>Blackwell Publishing Ltd</general><general>Blackwell</general><scope>IQODW</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>7TS</scope><scope>7X8</scope></search><sort><creationdate>200011</creationdate><title>Parent‐ and Patient‐ Validated Content for Pediatric Epilepsy Quality‐of‐Life Assessment</title><author>Arunkumar, G. ; Wyllie, E. ; Kotagal, P. ; Ong, H. T. ; Gilliam, F.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5114-cccd5d448105d6e3e099e0aae0cd1c250f83aeaa86b8434072e9f92fa5fff39e3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2000</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Ambulatory Care</topic><topic>Attitude to Health</topic><topic>Biological and medical sciences</topic><topic>Child</topic><topic>Child, Preschool</topic><topic>Children</topic><topic>Epilepsy</topic><topic>Epilepsy - diagnosis</topic><topic>Epilepsy - psychology</topic><topic>Female</topic><topic>Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy</topic><topic>Health Status Indicators</topic><topic>Hospitalization</topic><topic>Humans</topic><topic>Infant</topic><topic>Male</topic><topic>Medical sciences</topic><topic>Nervous system (semeiology, syndromes)</topic><topic>Neurology</topic><topic>Parents - psychology</topic><topic>Quality of Life - psychology</topic><topic>Quality‐of‐life measures</topic><topic>Reproducibility of Results</topic><topic>Sickness Impact Profile</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Arunkumar, G.</creatorcontrib><creatorcontrib>Wyllie, E.</creatorcontrib><creatorcontrib>Kotagal, P.</creatorcontrib><creatorcontrib>Ong, H. T.</creatorcontrib><creatorcontrib>Gilliam, F.</creatorcontrib><collection>Pascal-Francis</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>Physical Education Index</collection><collection>MEDLINE - Academic</collection><jtitle>Epilepsia (Copenhagen)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Arunkumar, G.</au><au>Wyllie, E.</au><au>Kotagal, P.</au><au>Ong, H. T.</au><au>Gilliam, F.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Parent‐ and Patient‐ Validated Content for Pediatric Epilepsy Quality‐of‐Life Assessment</atitle><jtitle>Epilepsia (Copenhagen)</jtitle><addtitle>Epilepsia</addtitle><date>2000-11</date><risdate>2000</risdate><volume>41</volume><issue>11</issue><spage>1474</spage><epage>1484</epage><pages>1474-1484</pages><issn>0013-9580</issn><eissn>1528-1167</eissn><coden>EPILAK</coden><abstract>Purpose: The purpose of this study was to assess the parent‐ and patient‐validated content of quality‐of‐life measurement for use in children with epilepsy.
Methods: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 years of age (mean, 10 years) and identified at the outpatient clinic or during hospital stay. To minimize investigator bias, parents and children listed their concerns in a private setting without staff involvement.
Results: Twenty‐six distinct domains were generated by the parents and children. Concerns listed by more than 20 of parents included medication adverse effects (58), cognitive effects of epilepsy (46), prospects for the future (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), brain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by more than 20 of children included social problems (35), cognitive effects of epilepsy (29), driving (29), sports (27), medication adverse effects (25), and schooling (21). Concerns ranked by children as most important included issues related to medication adverse effects (13), cognitive effects of epilepsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizures (6), injury (6), and dislike of hospital visits (6).
Conclusion: The effect of epilepsy on health‐related quality of life in pediatric patients is defined by a limited number of domains. A 20‐item inventory was chosen from the 26 domains generated by the parents and children. Our study provides insight into parents' and children's perception of seizures and the impact of epilepsy on everyday life.</abstract><cop>Oxford, UK</cop><pub>Blackwell Publishing Ltd</pub><pmid>11077463</pmid><doi>10.1111/j.1528-1157.2000.tb00125.x</doi><tpages>11</tpages><oa>free_for_read</oa></addata></record> |
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| subjects | Adolescent Adult Ambulatory Care Attitude to Health Biological and medical sciences Child Child, Preschool Children Epilepsy Epilepsy - diagnosis Epilepsy - psychology Female Headache. Facial pains. Syncopes. Epilepsia. Intracranial hypertension. Brain oedema. Cerebral palsy Health Status Indicators Hospitalization Humans Infant Male Medical sciences Nervous system (semeiology, syndromes) Neurology Parents - psychology Quality of Life - psychology Quality‐of‐life measures Reproducibility of Results Sickness Impact Profile |
| title | Parent‐ and Patient‐ Validated Content for Pediatric Epilepsy Quality‐of‐Life Assessment |
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