{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T03:22:51Z","timestamp":1783653771944,"version":"3.55.0"},"reference-count":46,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,6,28]],"date-time":"2021-06-28T00:00:00Z","timestamp":1624838400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,6,28]],"date-time":"2021-06-28T00:00:00Z","timestamp":1624838400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Neurol. Res. Pract."],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Tuberous sclerosis complex (TSC) is a monogenetic, multisystemic disease characterised by the formation of benign tumours that can affect almost all organs, caused by pathogenic variations in<jats:italic>TSC1<\/jats:italic>or<jats:italic>TSC2<\/jats:italic>. In this multicentre study from Germany, we investigated the influence of sociodemographic, clinical, and therapeutic factors on quality of life (QoL) among individuals with TSC.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We assessed sociodemographic and clinical characteristics and QoL among adults with TSC throughout Germany using a validated, three-month, retrospective questionnaire. We examined predictors of health-related QoL (HRQoL) using multiple linear regression analysis and compared the QoL among patients with TSC with QoL among patients with other chronic neurological disorders.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We enrolled 121 adults with TSC (mean age: 31.0\u2009\u00b1\u200910.5\u2009years; range: 18\u201361\u2009years, 45.5% [<jats:italic>n<\/jats:italic>\u2009=\u200955] women). Unemployment, a higher grade of disability, a higher number of organ manifestations, the presence of neuropsychiatric manifestations or active epilepsy, and a higher burden of therapy-related adverse events were associated with worse QoL, as measured by two QoL instruments (EuroQoL-5 dimensions [EQ-5D] and Quality of Life in Epilepsy Patients [QOLIE-31]). Neuropsychiatric and structural nervous system manifestations, the number of affected organs, and therapy-related adverse events were also associated with higher depression, as measured by the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E). In multiple regression analysis, more severe therapy-related adverse events (large effect,<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), active epilepsy (large effect,<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), and neuropsychiatric manifestations (medium effect,<jats:italic>p<\/jats:italic>\u2009=\u20090.003) were independently associated with worse HRQoL, explaining 65% of the variance (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001). The HRQoL among patients with active TSC-associated epilepsy was worse than that among patients with drug-refractory mesial temporal lobe epilepsy (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), and the generic QoL among patients with more than three TSC organ manifestations was similar to those of patients with severe migraine and uncontrolled asthma.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Active epilepsy, neuropsychiatric manifestations (such as anxiety and depression), and therapy-related adverse events are important independent predictors of worse quality of life among adults with TSC. Generic quality of life in TSC with several manifestations is similar to uncontrolled severe chronic diseases and significantly negatively correlates with TSC severity.<\/jats:p><\/jats:sec><jats:sec><jats:title>Trial registration<\/jats:title><jats:p>DRKS,<jats:ext-link xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" ext-link-type=\"uri\" xlink:href=\"http:\/\/www.drks.de\/DRKS00016045\">DRKS00016045<\/jats:ext-link>. Registered 01 March 2019.<\/jats:p><\/jats:sec>","DOI":"10.1186\/s42466-021-00130-3","type":"journal-article","created":{"date-parts":[[2021,6,28]],"date-time":"2021-06-28T00:02:18Z","timestamp":1624838538000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Quality of life and its predictors in adults with tuberous sclerosis complex (TSC): a multicentre cohort study from Germany"],"prefix":"10.1186","volume":"3","author":[{"given":"Johann Philipp","family":"Z\u00f6llner","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nadine","family":"Conradi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthias","family":"Sauter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Markus","family":"Knuf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne","family":"Knake","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerhard","family":"Kurlemann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Mayer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christoph","family":"Hertzberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Astrid","family":"Bertsche","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilka","family":"Immisch","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karl Martin","family":"Klein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Klaus","family":"Marquard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sascha","family":"Meyer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna H.","family":"Noda","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felix","family":"von Podewils","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hannah","family":"Sch\u00e4fer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"Thiels","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bianca","family":"Zukunft","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne","family":"Schubert-Bast","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janina","family":"Grau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laurent M.","family":"Willems","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felix","family":"Rosenow","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens-Peter","family":"Reese","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6288-9915","authenticated-orcid":false,"given":"Adam","family":"Strzelczyk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2021,6,28]]},"reference":[{"issue":"1","key":"130_CR1","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1186\/s13023-018-0870-y","volume":"13","author":"D Ebrahimi-Fakhari","year":"2018","unstructured":"Ebrahimi-Fakhari, D., Mann, L. L., Poryo, M., Graf, N., von Kries, R., Heinrich, B., \u2026 Meyer, S. (2018). Incidence of tuberous sclerosis and age at first diagnosis: new data and emerging trends from a national, prospective surveillance study. Orphanet Journal of Rare Diseases, 13(1), 117. https:\/\/doi.org\/10.1186\/s13023-018-0870-y .","journal-title":"Orphanet Journal of Rare Diseases"},{"key":"130_CR2","doi-asserted-by":"publisher","unstructured":"Z\u00f6llner, J. P., Franz, D. N., Hertzberg, C., Nabbout, R., Rosenow, F., Sauter, M., \u2026 Strzelczyk, A. (2020). A systematic review on the burden of illness in individuals with tuberous sclerosis complex (TSC). Orphanet Journal of Rare Diseases, 15(1), 23. https:\/\/doi.org\/10.1186\/s13023-019-1258-3.","DOI":"10.1186\/s13023-019-1258-3"},{"issue":"9114","key":"130_CR3","doi-asserted-by":"publisher","first-page":"1490","DOI":"10.1016\/S0140-6736(05)78872-3","volume":"351","author":"FJ O'Callaghan","year":"1998","unstructured":"O'Callaghan, F. J., Shiell, A. W., Osborne, J. P., & Martyn, C. N. (1998). Prevalence of tuberous sclerosis estimated by capture-recapture analysis. Lancet, 351(9114), 1490. https:\/\/doi.org\/10.1016\/S0140-6736(05)78872-3 .","journal-title":"Lancet"},{"issue":"6","key":"130_CR4","doi-asserted-by":"publisher","first-page":"1282","DOI":"10.1111\/bjd.14415","volume":"174","author":"CH Hong","year":"2016","unstructured":"Hong, C. H., Tu, H. P., Lin, J. R., & Lee, C. H. (2016). An estimation of the incidence of tuberous sclerosis complex in a nationwide retrospective cohort study (1997-2010). The British Journal of Dermatology, 174(6), 1282\u20131289. https:\/\/doi.org\/10.1111\/bjd.14415 .","journal-title":"The British Journal of Dermatology"},{"issue":"7","key":"130_CR5","doi-asserted-by":"publisher","first-page":"733","DOI":"10.1016\/S1474-4422(15)00069-1","volume":"14","author":"P Curatolo","year":"2015","unstructured":"Curatolo, P., Moavero, R., & de Vries, P. J. (2015). Neurological and neuropsychiatric aspects of tuberous sclerosis complex. Lancet Neurology, 14(7), 733\u2013745. https:\/\/doi.org\/10.1016\/S1474-4422(15)00069-1.","journal-title":"Lancet Neurology"},{"key":"130_CR6","doi-asserted-by":"publisher","unstructured":"J\u00f3zwiak, S., Schwartz, R. A., Janniger, C. K., & Bielicka-Cymerman, J. (2000). Usefulness of diagnostic criteria of tuberous sclerosis complex in pediatric patients. Journal of Child Neurology, 15(10), 652\u2013659. https:\/\/doi.org\/10.1177\/088307380001501003.","DOI":"10.1177\/088307380001501003"},{"issue":"7","key":"130_CR7","doi-asserted-by":"publisher","first-page":"1236","DOI":"10.1111\/j.1528-1167.2009.02474.x","volume":"51","author":"CJ Chu-Shore","year":"2010","unstructured":"Chu-Shore, C. J., Major, P., Camposano, S., Muzykewicz, D., & Thiele, E. A. (2010). The natural history of epilepsy in tuberous sclerosis complex. Epilepsia, 51(7), 1236\u20131241.","journal-title":"Epilepsia"},{"key":"130_CR8","doi-asserted-by":"publisher","first-page":"972","DOI":"10.3389\/fneur.2020.00972","volume":"11","author":"JC Kingswood","year":"2020","unstructured":"Kingswood, J. C., Belousova, E., Benedik, M. P., Carter, T., Cottin, V., Curatolo, P., et al. (2020). Renal manifestations of tuberous sclerosis complex: Key findings from the final analysis of the TOSCA study Focussing mainly on renal Angiomyolipomas. Frontiers in Neurology, 11, 972. https:\/\/doi.org\/10.3389\/fneur.2020.00972 .","journal-title":"Frontiers in Neurology"},{"issue":"2","key":"130_CR9","doi-asserted-by":"publisher","first-page":"444","DOI":"10.1378\/chest.14-3095","volume":"148","author":"AS Kristof","year":"2015","unstructured":"Kristof, A. S., Zhi Li, P., Major, P., & Landry, J. S. (2015). Lymphangioleiomyomatosis and tuberous sclerosis complex in Quebec: Prevalence and health-care utilization. Chest, 148(2), 444\u2013449. https:\/\/doi.org\/10.1378\/chest.14-3095 .","journal-title":"Chest"},{"issue":"11","key":"130_CR10","doi-asserted-by":"publisher","first-page":"1087","DOI":"10.1080\/13696998.2016.1199432","volume":"19","author":"JC Kingswood","year":"2016","unstructured":"Kingswood, J. C., Crawford, P., Johnson, S. R., Sampson, J. R., Shepherd, C., Demuth, D., \u2026 Gray, E. (2016). The economic burden of tuberous sclerosis complex in the UK: A retrospective cohort study in the clinical practice research datalink. Journal of Medical Economics, 19(11), 1087\u20131098. https:\/\/doi.org\/10.1080\/13696998.2016.1199432 .","journal-title":"Journal of Medical Economics"},{"issue":"10","key":"130_CR11","doi-asserted-by":"publisher","first-page":"e015236","DOI":"10.1136\/bmjopen-2016-015236","volume":"7","author":"C Shepherd","year":"2017","unstructured":"Shepherd, C., Koepp, M., Myland, M., Patel, K., Miglio, C., Siva, V., \u2026 Neary, M. (2017). Understanding the health economic burden of patients with tuberous sclerosis complex (TSC) with epilepsy: A retrospective cohort study in the UK clinical practice research datalink (CPRD). BMJ Open, 7(10), e015236. https:\/\/doi.org\/10.1136\/bmjopen-2016-015236 .","journal-title":"BMJ Open"},{"key":"130_CR12","doi-asserted-by":"publisher","first-page":"904","DOI":"10.3389\/fneur.2020.00904","volume":"11","author":"AC Jansen","year":"2020","unstructured":"Jansen, A. C., Vanclooster, S., de Vries, P. J., Fladrowski, C., Beaure d'Augeres, G., Carter, T., et al. (2020). Burden of illness and quality of life in tuberous sclerosis complex: Findings from the TOSCA study. Frontiers in Neurology, 11, 904. https:\/\/doi.org\/10.3389\/fneur.2020.00904 .","journal-title":"Frontiers in Neurology"},{"key":"130_CR13","doi-asserted-by":"publisher","unstructured":"Z\u00f6llner, J. P., Grau, J., Rosenow, F., Sauter, M., Knuf, M., Kurlemann, G., et al. (2021). Direct and indirect costs and cost-driving factors in adults with tuberous sclerosis complex: A multicenter cohort study and a review of the literature. Orphanet Journal of Rare Diseases, 16(1). https:\/\/doi.org\/10.1186\/s13023-021-01838-w.","DOI":"10.1186\/s13023-021-01838-w"},{"issue":"6","key":"130_CR14","doi-asserted-by":"publisher","first-page":"801","DOI":"10.1016\/j.ejpn.2019.09.006","volume":"23","author":"S Amin","year":"2019","unstructured":"Amin, S., Mallick, A. A., Lux, A., & O'Callaghan, F. (2019). Quality of life in patients with tuberous sclerosis complex (TSC). European Journal of Paediatric Neurology, 23(6), 801\u2013807. https:\/\/doi.org\/10.1016\/j.ejpn.2019.09.006 .","journal-title":"European Journal of Paediatric Neurology"},{"key":"130_CR15","doi-asserted-by":"publisher","first-page":"213","DOI":"10.1016\/j.yebeh.2018.11.021","volume":"92","author":"T Tritton","year":"2019","unstructured":"Tritton, T., Bennett, B., Brohan, E., Grant, L., Cooper, A., Fladrowski, C., \u2026 Kingswood, C. (2019). Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: A web-based survey. Epilepsy & Behavior, 92, 213\u2013220. https:\/\/doi.org\/10.1016\/j.yebeh.2018.11.021 .","journal-title":"Epilepsy & Behavior"},{"issue":"4","key":"130_CR16","doi-asserted-by":"publisher","first-page":"581","DOI":"10.1002\/epi4.12365","volume":"4","author":"M Vergeer","year":"2019","unstructured":"Vergeer, M., de Ranitz-Greven, W. L., Neary, M. P., Ionescu-Ittu, R., Emond, B., Sheng Duh, M., \u2026 Zonnenberg, B. A. (2019). Epilepsy, impaired functioning, and quality of life in patients with tuberous sclerosis complex. Epilepsia Open, 4(4), 581\u2013592. https:\/\/doi.org\/10.1002\/epi4.12365 .","journal-title":"Epilepsia Open"},{"issue":"4","key":"130_CR17","doi-asserted-by":"publisher","first-page":"243","DOI":"10.1016\/j.pediatrneurol.2013.08.001","volume":"49","author":"H Northrup","year":"2013","unstructured":"Northrup, H., Krueger, D. A., & International tuberous sclerosis complex consensus G (2013). Tuberous sclerosis complex diagnostic criteria update: Recommendations of the 2012 Iinternational tuberous sclerosis complex consensus conference. Pediatric Neurology, 49(4), 243\u2013254. https:\/\/doi.org\/10.1016\/j.pediatrneurol.2013.08.001 .","journal-title":"Pediatric Neurology"},{"issue":"4","key":"130_CR18","doi-asserted-by":"publisher","first-page":"522","DOI":"10.1111\/epi.13670","volume":"58","author":"RS Fisher","year":"2017","unstructured":"Fisher, R. S., Cross, J. H., French, J. A., Higurashi, N., Hirsch, E., Jansen, F. E., et al. (2017). Operational classification of seizure types by the international league against epilepsy: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 522\u2013530. https:\/\/doi.org\/10.1111\/epi.13670 .","journal-title":"Epilepsia"},{"issue":"4","key":"130_CR19","doi-asserted-by":"publisher","first-page":"512","DOI":"10.1111\/epi.13709","volume":"58","author":"IE Scheffer","year":"2017","unstructured":"Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., et al. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512\u2013521. https:\/\/doi.org\/10.1111\/epi.13709 .","journal-title":"Epilepsia"},{"key":"130_CR20","doi-asserted-by":"publisher","unstructured":"Willems L.M., Watermann N., Richter S., Kay L., Hermsen A.M., Knake S., ... Strzelczyk A. (2018). Incidence, Risk Factors and Consequences of Epilepsy-Related Injuries and Accidents: A Retrospective, Single Center Study. Frontiers in Neurology, 9, 414. https:\/\/doi.org\/10.3389\/fneur.2018.00414.","DOI":"10.3389\/fneur.2018.00414"},{"key":"130_CR21","doi-asserted-by":"publisher","unstructured":"Riechmann J., Willems L.M., Boor R., Kieslich M., Knake S., Langner C., ... Strzelczyk A. (2019). Quality of life and correlating factors in children, adolescents with epilepsy, and their caregivers: A cross-sectional multicenter study from Germany. Seizure, 69, 92\u201398. https:\/\/doi.org\/10.1016\/j.seizure.2019.03.016.","DOI":"10.1016\/j.seizure.2019.03.016"},{"issue":"9","key":"130_CR22","doi-asserted-by":"publisher","first-page":"1388","DOI":"10.1111\/epi.13089","volume":"56","author":"J Riechmann","year":"2015","unstructured":"Riechmann, J., Strzelczyk, A., Reese, J. P., Boor, R., Stephani, U., Langner, C., \u2026 the EpiPaed Study Group (2015). Costs of epilepsy and cost-driving factors in children, adolescents, and their caregivers in Germany. Epilepsia, 56(9), 1388\u20131397. https:\/\/doi.org\/10.1111\/epi.13089 .","journal-title":"Epilepsia"},{"issue":"4","key":"130_CR23","doi-asserted-by":"publisher","first-page":"451","DOI":"10.1016\/j.yebeh.2012.01.021","volume":"23","author":"A Strzelczyk","year":"2012","unstructured":"Strzelczyk, A., Nickolay, T., Bauer, S., Haag, A., Knake, S., Oertel, W. H., \u2026 Hamer, H. M. (2012). Evaluation of health-care utilization among adult patients with epilepsy in Germany. Epilepsy & Behavior, 23(4), 451\u2013457. https:\/\/doi.org\/10.1016\/j.yebeh.2012.01.021 .","journal-title":"Epilepsy & Behavior"},{"issue":"8","key":"130_CR24","doi-asserted-by":"publisher","first-page":"1697","DOI":"10.1111\/epi.16099","volume":"60","author":"A Strzelczyk","year":"2019","unstructured":"Strzelczyk, A., Schubert-Bast, S., Bast, T., Bettendorf, U., Fiedler, B., Hamer, H. M., \u2026 Rosenow, F. (2019). A multicenter, matched case-control analysis comparing burden-of-illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany. Epilepsia, 60(8), 1697\u20131710. https:\/\/doi.org\/10.1111\/epi.16099 .","journal-title":"Epilepsia"},{"key":"130_CR25","doi-asserted-by":"publisher","first-page":"28","DOI":"10.1016\/j.yebeh.2018.03.025","volume":"83","author":"LM Willems","year":"2018","unstructured":"Willems, L. M., Richter, S., Watermann, N., Bauer, S., Klein, K. M., Reese, J. P., et al. (2018). Trends in resource utilization and prescription of anticonvulsants for patients with active epilepsy in Germany from 2003 to 2013 - a ten-year overview. Epilepsy & Behavior, 83, 28\u201335. https:\/\/doi.org\/10.1016\/j.yebeh.2018.03.025","journal-title":"Epilepsy & Behavior"},{"key":"130_CR26","doi-asserted-by":"publisher","unstructured":"May, T. W., Pf\u00e4fflin, M., & Cramer, J. A. (2001). Psychometric properties of the German translation of the QOLIE-31. Epilepsy & Behavior, 2(2), 106\u2013114. https:\/\/doi.org\/10.1006\/ebeh.2001.0170.","DOI":"10.1006\/ebeh.2001.0170"},{"issue":"4","key":"130_CR27","doi-asserted-by":"publisher","first-page":"283","DOI":"10.1007\/s10309-012-0269-z","volume":"25","author":"B Metternich","year":"2012","unstructured":"Metternich, B., Wagner, K., Buschmann, F., Anger, R., & Schulze-Bonhage, A. (2012). Depressionsscreening bei Epilepsiepatienten. Zeitschrift f\u00fcr Epileptologie, 25(4), 283\u2013288. https:\/\/doi.org\/10.1007\/s10309-012-0269-z .","journal-title":"Zeitschrift f\u00fcr Epileptologie"},{"issue":"1","key":"130_CR28","doi-asserted-by":"publisher","first-page":"98","DOI":"10.1111\/j.1528-1157.2000.tb01512.x","volume":"41","author":"GA Baker","year":"2000","unstructured":"Baker, G. A., Brooks, J., Buck, D., & Jacoby, A. (2000). The stigma of epilepsy: A European perspective. Epilepsia, 41(1), 98\u2013104. https:\/\/doi.org\/10.1111\/j.1528-1157.2000.tb01512.x .","journal-title":"Epilepsia"},{"issue":"5","key":"130_CR29","doi-asserted-by":"publisher","first-page":"399","DOI":"10.1016\/S1474-4422(06)70415-X","volume":"5","author":"FG Gilliam","year":"2006","unstructured":"Gilliam, F. G., Barry, J. J., Hermann, B. P., Meador, K. J., Vahle, V., & Kanner, A. M. (2006). Rapid detection of major depression in epilepsy: A multicentre study. Lancet Neurology, 5(5), 399\u2013405. https:\/\/doi.org\/10.1016\/S1474-4422(06)70415-X .","journal-title":"Lancet Neurology"},{"key":"130_CR30","doi-asserted-by":"publisher","first-page":"111","DOI":"10.1016\/j.yebeh.2018.01.028","volume":"81","author":"M Romoli","year":"2018","unstructured":"Romoli, M., Eusebi, P., Siliquini, S., Bedetti, C., Calabresi, P., & Costa, C. (2018). Liverpool adverse events profile: Italian validation and predictive value for dropout from antiepileptic treatment in people with epilepsy. Epilepsy & Behavior, 81, 111\u2013114. https:\/\/doi.org\/10.1016\/j.yebeh.2018.01.028 .","journal-title":"Epilepsy & Behavior"},{"key":"130_CR31","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511761676","volume-title":"The essential guide to effect sizes: Statistical power, meta-analysis, and the interpretation of research results","author":"PD Ellis","year":"2010","unstructured":"Ellis, P. D. (2010). The essential guide to effect sizes: Statistical power, meta-analysis, and the interpretation of research results. Cambridge: Cambridge University Press. https:\/\/doi.org\/10.1017\/CBO9780511761676 ."},{"key":"130_CR32","unstructured":"Miles, J., & Shevlin, M. (2001). Applying regression and correlation: a guide for students and researchers. London: SAGE Publications."},{"issue":"1","key":"130_CR33","doi-asserted-by":"crossref","first-page":"289","DOI":"10.1111\/j.2517-6161.1995.tb02031.x","volume":"57","author":"Y Benjamini","year":"1995","unstructured":"Benjamini, Y., & Hochberg, Y. (1995). Controlling the false discovery rate: A practical and powerful approach to multiple testing. Journal of the Royal Statistical Society: Series B (Methodological), 57(1), 289\u2013300.","journal-title":"Journal of the Royal Statistical Society: Series B (Methodological)"},{"issue":"3","key":"130_CR34","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1684\/epd.2013.0590","volume":"15","author":"MA Alonso-Vanegas","year":"2013","unstructured":"Alonso-Vanegas, M. A., Cisneros-Franco, J. M., Castillo-Montoya, C., Martinez-Rosas, A. R., Gomez-Perez, M. E., & Rubio-Donnadieu, F. (2013). Self-reported quality of life in pharmacoresistant temporal lobe epilepsy: Correlation with clinical variables and memory evaluation. Epileptic Disorders, 15(3), 263\u2013271. https:\/\/doi.org\/10.1684\/epd.2013.0590 .","journal-title":"Epileptic Disorders"},{"key":"130_CR35","unstructured":"Quality of Life in Epilepsy Scoring Manual [https:\/\/www.rand.org\/content\/dam\/rand\/www\/external\/health\/surveys_tools\/qolie\/qolie31_scoring.pdf]. Accessed 1 Mar 2021."},{"issue":"11","key":"130_CR36","doi-asserted-by":"publisher","first-page":"1089","DOI":"10.1111\/j.1528-1157.1995.tb00467.x","volume":"36","author":"O Devinsky","year":"1995","unstructured":"Devinsky, O., Vickrey, B. G., Cramer, J., Perrine, K., Hermann, B., Meador, K., & Hays, R. D. (1995). Development of the quality of life in epilepsy inventory. Epilepsia, 36(11), 1089\u20131104. https:\/\/doi.org\/10.1111\/j.1528-1157.1995.tb00467.x.","journal-title":"Epilepsia"},{"key":"130_CR37","doi-asserted-by":"publisher","unstructured":"Huber, M. B., Felix, J., Vogelmann, M., & Leidl, R. (2017). Health-Related Quality of Life of the General German Population in 2015: Results from the EQ-5D-5L. International Journal of Environmental Research and Public Health, 14(4), 426. https:\/\/doi.org\/10.3390\/ijerph14040426.","DOI":"10.3390\/ijerph14040426"},{"key":"130_CR38","doi-asserted-by":"publisher","first-page":"27","DOI":"10.2147\/PROM.S222597","volume":"11","author":"C Lucas","year":"2020","unstructured":"Lucas, C., Aly, S., Touboul, C., Sellami, R., Guillaume, X., & Garcia, G. (2020). Patient-reported outcome in two chronic diseases: A comparison of quality of life and response profiles in severe migraine and severe asthma. Patient Related Outcome Measures, 11, 27\u201337. https:\/\/doi.org\/10.2147\/PROM.S222597 .","journal-title":"Patient Related Outcome Measures"},{"key":"130_CR39","doi-asserted-by":"publisher","first-page":"964","DOI":"10.3389\/fphar.2018.00964","volume":"9","author":"PJ de Vries","year":"2018","unstructured":"de Vries, P. J., Franz, D. N., Curatolo, P., Nabbout, R., Neary, M., Herbst, F., \u2026 Lawson, J. A. (2018). Measuring health-related quality of life in tuberous sclerosis complex - psychometric evaluation of three instruments in individuals with refractory epilepsy. Frontiers in Pharmacology, 9, 964. https:\/\/doi.org\/10.3389\/fphar.2018.00964 .","journal-title":"Frontiers in Pharmacology"},{"key":"130_CR40","doi-asserted-by":"publisher","unstructured":"Strzelczyk, A., Grau, J., Bast, T., Bertsche, A., Bettendorf, U., Hahn, A., \u2026 Z\u00f6llner, J. P. (2021). Prescription patterns of antiseizure drugs in tuberous sclerosis complex (TSC)-associated epilepsy: A multicenter cohort study from Germany and review of the literature. Expert Review of Clinical Pharmacology. https:\/\/doi.org\/10.1080\/17512433.2021.1911643 .","DOI":"10.1080\/17512433.2021.1911643"},{"key":"130_CR41","doi-asserted-by":"publisher","unstructured":"Stockinger J., Strzelczyk A., Nemecek A., Cicanic M., B\u00f6sebeck F., Brandt C., ... Steinhoff B.J. (2021). Everolimus in adult tuberous sclerosis complex patients with epilepsy: Too late for success? A retrospective study. Epilepsia, 62, 785\u2013794. https:\/\/doi.org\/10.1111\/epi.16829.","DOI":"10.1111\/epi.16829"},{"issue":"3","key":"130_CR42","doi-asserted-by":"publisher","first-page":"456","DOI":"10.1111\/j.1528-1167.2006.00956.x","volume":"48","author":"RJ Panelli","year":"2007","unstructured":"Panelli, R. J., Kilpatrick, C., Moore, S. M., Matkovic, Z., D'Souza, W. J., & O'Brien, T. J. (2007). The Liverpool adverse events profile: Relation to AED use and mood. Epilepsia, 48(3), 456\u2013463. https:\/\/doi.org\/10.1111\/j.1528-1167.2006.00956.x .","journal-title":"Epilepsia"},{"key":"130_CR43","doi-asserted-by":"publisher","first-page":"41","DOI":"10.1016\/j.pediatrneurol.2018.10.011","volume":"91","author":"KE Mowrey","year":"2019","unstructured":"Mowrey, K. E., Ashfaq, M., Pearson, D. A., Hashmi, S. S., Roberds, S. L., Farach, L. S., & Northrup, H. (2019). The impact of psychiatric symptoms on tuberous sclerosis complex and utilization of mental health treatment. Pediatric Neurology, 91, 41\u201349. https:\/\/doi.org\/10.1016\/j.pediatrneurol.2018.10.011 .","journal-title":"Pediatric Neurology"},{"issue":"3","key":"130_CR44","doi-asserted-by":"publisher","first-page":"402","DOI":"10.1016\/j.yebeh.2007.02.004","volume":"10","author":"MB Pulsifer","year":"2007","unstructured":"Pulsifer, M. B., Winterkorn, E. B., & Thiele, E. A. (2007). Psychological profile of adults with tuberous sclerosis complex. Epilepsy & Behavior, 10(3), 402\u2013406. https:\/\/doi.org\/10.1016\/j.yebeh.2007.02.004 .","journal-title":"Epilepsy & Behavior"},{"issue":"5","key":"130_CR45","doi-asserted-by":"publisher","first-page":"679","DOI":"10.1002\/ana.23960","volume":"74","author":"DA Krueger","year":"2013","unstructured":"Krueger, D. A., Wilfong, A. A., Holland-Bouley, K., Anderson, A. E., Agricola, K., Tudor, C., \u2026 Franz, D. N. (2013). Everolimus treatment of refractory epilepsy in tuberous sclerosis complex. Annals of Neurology, 74(5), 679\u2013687. https:\/\/doi.org\/10.1002\/ana.23960 .","journal-title":"Annals of Neurology"},{"issue":"2","key":"130_CR46","doi-asserted-by":"publisher","first-page":"570","DOI":"10.1093\/brain\/awz411","volume":"143","author":"S Liu","year":"2020","unstructured":"Liu, S., Yu, T., Guan, Y., Zhang, K., Ding, P., Chen, L., \u2026 Liang, S. (2020). Resective epilepsy surgery in tuberous sclerosis complex: A nationwide multicentre retrospective study from China. Brain, 143(2), 570\u2013581. https:\/\/doi.org\/10.1093\/brain\/awz411 .","journal-title":"Brain"}],"container-title":["Neurological Research and Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s42466-021-00130-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s42466-021-00130-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s42466-021-00130-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,9,2]],"date-time":"2024-09-02T19:26:29Z","timestamp":1725305189000},"score":1,"resource":{"primary":{"URL":"https:\/\/neurolrespract.biomedcentral.com\/articles\/10.1186\/s42466-021-00130-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,6,28]]},"references-count":46,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["130"],"URL":"https:\/\/doi.org\/10.1186\/s42466-021-00130-3","relation":{},"ISSN":["2524-3489"],"issn-type":[{"value":"2524-3489","type":"electronic"}],"subject":[],"published":{"date-parts":[[2021,6,28]]},"assertion":[{"value":"26 March 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 May 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"28 June 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"This study received ethics approval by the Goethe-University Frankfurt (reference 324\/18), and all participants provided informed consent.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"JPZ reports speakers\u2019 honoraria and travel grants from Eisai and Desitin Arzneimittel.FR reports personal fees from Arvelle Therapeutics, Desitin Arzneimittel, Eisai, GW Pharmaceuticals companies, Novartis, Medtronic, Sandoz, Shire, and UCB and grants from the Detlev-Wrobel-Fonds for Epilepsy Research, the Deutsche Forschungsgemeinschaft, the LOEWE Programme of the State of Hesse, and the European Union.MS reports personal fees from Novartis and GW Pharmaceuticals companies.GK reports personal fees from Desitin Arzneimittel, Eisai, GW Pharmaceuticals companies, UCB, Novartis, Takeda, and Zogenix.TM reports personal fees and grants from Arvelle Therapeutics, Eisai, GW Pharmaceuticals companies, UCB, and Zogenix.CH reports personal fees from Desitin Arzneimittel, Eisai, GW Pharmaceuticals companies, Novartis, Shire, and Zogenix.AB reports personal fees from Desitin Arzneimittel GmbH, Eisai GmbH, GW Pharma GmbH, Shire\/Takeda GmbH, UCB Pharma GmbH, and ViroPharma GmbH.KMK reports personal fees from UCB Pharma, Novartis Pharma AG, Eisai, and GW Pharmaceuticals and grants from the federal state Hessen, through the LOEWE program, and from the Canadian Institutes of Health Research.SM reports grants from Novartis, UCB, Shire, Deutsche Forschungsgemeinschaft, and Epilepsiestiftung Dr. Wolf.FvP reports personal fees and grants from Bial, Desitin Arzneimittel, Eisai, GW Pharmaceutical companies, Arvelle Therapeutics, Zogenix, and UCB Pharma.SS-B reports personal fees from Eisai, Desitin Pharma, GW Pharmaceuticals companies, LivaNova, UCB, and Zogenix.AS reports personal fees and grants from Arvelle Therapeutics, Desitin Arzneimittel, Eisai, GW Pharmaceutical companies, LivaNova, Marinus Pharma, Medtronic, UCB, and Zogenix.None of the other authors reported any related conflicts of interest.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"35"}}