{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T18:04:54Z","timestamp":1787508294949,"version":"build-2736575974"},"reference-count":36,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2019,3,4]],"date-time":"2019-03-04T00:00:00Z","timestamp":1551657600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Zogenix International Ltd"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2019,10]]},"abstract":"<jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>\n                      Caregivers of children with Dravet syndrome in four countries (Australia [\n                      <jats:italic>n<\/jats:italic>\n                      =8];\n                      <jats:styled-content style=\"fixed-case\">USA<\/jats:styled-content>\n                      ,\n                      <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>\n                      , and Italy [all\n                      <jats:italic>n<\/jats:italic>\n                      =4]) participated in 1\u2010hour qualitative telephone interviews, identifying key Dravet syndrome concepts. Interviews were recorded, transcribed, and, where necessary, translated into English for thematic analysis. Conceptual saturation was assessed and findings compared to the previously developed French conceptual disease model.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>The most common seizure types reported by caregivers were tonic\u2013clonic, absence, or focal\u2010impaired awareness (localized\/partial). Fever and physical activity were the most commonly reported triggers. Patient\u2010relevant impacts included impairment in cognition, motor skills, communication, social skills, and behavioural functioning. Caregivers consistently reported negative social, physical, and family impacts. Concepts identified in the interviews showed similarity with the French conceptual model. Minor differences between countries are likely to reflect variations in health care systems.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Interpretation<\/jats:title>\n                    <jats:p>\n                      Findings in Italy, Australia,\n                      <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>\n                      , and\n                      <jats:styled-content style=\"fixed-case\">USA<\/jats:styled-content>\n                      confirm that the key impacts of Dravet syndrome on children and caregivers identified in France are generalizable across countries. Key symptom and impact concepts relevant to children and parents should be targeted as critical outcomes in new therapy evaluations.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>What this paper adds<\/jats:title>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>Relevance of the impact of Dravet syndrome on children and caregivers was confirmed across countries.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Patient and caregiver\u2010relevant Dravet syndrome impacts contribute to poorer health\u2010related quality of life.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Indirect seizure impacts were reported to be as important as direct impacts.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>Country\u2010specific differences in concepts probably reflect differences in health care systems.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/dmcn.14186","type":"journal-article","created":{"date-parts":[[2019,3,4]],"date-time":"2019-03-04T04:37:36Z","timestamp":1551674256000},"page":"1229-1236","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":68,"title":["Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures"],"prefix":"10.1111","volume":"61","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5877-4074","authenticated-orcid":false,"given":"Rima","family":"Nabbout","sequence":"first","affiliation":[{"name":"Reference Centre for Rare Epilepsies Necker\u2010Enfants Malades Inserm U1163 Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephane","family":"Auvin","sequence":"additional","affiliation":[{"name":"H\u00f4pital Robert Debr\u00e9 APHP Inserm U1141 Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Chiron","sequence":"additional","affiliation":[{"name":"Reference Centre for Rare Epilepsies Necker\u2010Enfants Malades Inserm U1163 Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Thiele","sequence":"additional","affiliation":[{"name":"Herscot Center for Tuberous Sclerosis Complex Massachusetts General Hospital Boston MA 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