Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers : a multicentre cohort study from Germany
Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with...
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Gespeichert in:
| Format: |
E-Artikel |
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| Sprache: |
Englisch |
| Erschienen: |
7 October 2021 |
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| Schlagwörter: |
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| Anmerkung: |
Gesehen am 29.01.2022 |
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| Umfang: |
12 |
| Übergeordnetes Werk: |
Enthalten in: European journal of paediatric neurology - Burlington, Mass. : Harcourt, 1997, 35(2021), Seite 111-122 |
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| Übergeordnetes Werk: |
volume:35 ; year:2021 ; pages:111-122 ; extent:12 |
| Links: |
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| DOI / URN: |
10.1016/j.ejpn.2021.10.003 |
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| Katalog-ID: |
1787761347 |
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| 100 | 1 | |a Willems, Laurent |d 1988- |e verfasserin |0 (DE-588)1091093849 |0 (DE-627)852169701 |0 (DE-576)461242524 |4 aut | |
| 245 | 1 | 0 | |a Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers |b a multicentre cohort study from Germany |c Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk |
| 264 | 1 | |c 7 October 2021 | |
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| 520 | |a Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. | ||
| 650 | 4 | |a Angiomyolipoma | |
| 650 | 4 | |a Depression | |
| 650 | 4 | |a Epilepsy | |
| 650 | 4 | |a Seizure | |
| 650 | 4 | |a TSC | |
| 700 | 1 | |a Schubert-Bast, Susanne |e verfasserin |4 aut | |
| 700 | 1 | |a Grau, Janina |e verfasserin |4 aut | |
| 700 | 1 | |a Hertzberg, Christoph |e verfasserin |4 aut | |
| 700 | 1 | |a Kurlemann, Gerhard |e verfasserin |4 aut | |
| 700 | 1 | |a Wiemer-Kruel, Adelheid |e verfasserin |4 aut | |
| 700 | 1 | |a Bast, Thomas |e verfasserin |4 aut | |
| 700 | 1 | |a Bertsche, Astrid |e verfasserin |4 aut | |
| 700 | 1 | |a Bettendorf, Ulrich |e verfasserin |4 aut | |
| 700 | 1 | |a Fiedler, Barbara |e verfasserin |4 aut | |
| 700 | 1 | |a Hahn, Andreas |e verfasserin |4 aut | |
| 700 | 1 | |a Hartmann, Hans |e verfasserin |4 aut | |
| 700 | 1 | |a Hornemann, Frauke |e verfasserin |4 aut | |
| 700 | 1 | |a Immisch, Ilka |e verfasserin |4 aut | |
| 700 | 1 | |a Jacobs, Julia |e verfasserin |4 aut | |
| 700 | 1 | |a Kieslich, Matthias |e verfasserin |4 aut | |
| 700 | 1 | |a Klein, Karl Martin |e verfasserin |4 aut | |
| 700 | 1 | |a Klotz, Kerstin A. |e verfasserin |4 aut | |
| 700 | 1 | |a Kluger, Gerhard |e verfasserin |4 aut | |
| 700 | 1 | |a Knuf, Markus |e verfasserin |4 aut | |
| 700 | 1 | |a Mayer, Thomas |e verfasserin |4 aut | |
| 700 | 1 | |a Marquard, Klaus |e verfasserin |4 aut | |
| 700 | 1 | |a Meyer, Sascha |e verfasserin |4 aut | |
| 700 | 1 | |a Muhle, Hiltrud |e verfasserin |4 aut | |
| 700 | 1 | |a Müller-Schlüter, Karen |e verfasserin |4 aut | |
| 700 | 1 | |a Noda, Anna H. |e verfasserin |4 aut | |
| 700 | 1 | |a Ruf, Susanne |e verfasserin |4 aut | |
| 700 | 1 | |a Sauter, Matthias |e verfasserin |4 aut | |
| 700 | 1 | |a Schlump, Jan-Ulrich |e verfasserin |4 aut | |
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| 700 | 1 | |a Thiels, Charlotte |e verfasserin |4 aut | |
| 700 | 1 | |a Trollmann, Regina |e verfasserin |4 aut | |
| 700 | 1 | |a Wilken, Bernd |e verfasserin |4 aut | |
| 700 | 1 | |a Zöllner, Johann Philipp |e verfasserin |4 aut | |
| 700 | 1 | |a Rosenow, Felix |e verfasserin |4 aut | |
| 700 | 1 | |a Strzelczyk, Adam |e verfasserin |4 aut | |
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10.1016/j.ejpn.2021.10.003 doi (DE-627)1787761347 (DE-599)KXP1787761347 (OCoLC)1341439497 DE-627 ger DE-627 rda eng Willems, Laurent 1988- verfasserin (DE-588)1091093849 (DE-627)852169701 (DE-576)461242524 aut Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk 7 October 2021 12 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Gesehen am 29.01.2022 Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Angiomyolipoma Depression Epilepsy Seizure TSC Schubert-Bast, Susanne verfasserin aut Grau, Janina verfasserin aut Hertzberg, Christoph verfasserin aut Kurlemann, Gerhard verfasserin aut Wiemer-Kruel, Adelheid verfasserin aut Bast, Thomas verfasserin aut Bertsche, Astrid verfasserin aut Bettendorf, Ulrich verfasserin aut Fiedler, Barbara verfasserin aut Hahn, Andreas verfasserin aut Hartmann, Hans verfasserin aut Hornemann, Frauke verfasserin aut Immisch, Ilka verfasserin aut Jacobs, Julia verfasserin aut Kieslich, Matthias verfasserin aut Klein, Karl Martin verfasserin aut Klotz, Kerstin A. verfasserin aut Kluger, Gerhard verfasserin aut Knuf, Markus verfasserin aut Mayer, Thomas verfasserin aut Marquard, Klaus verfasserin aut Meyer, Sascha verfasserin aut Muhle, Hiltrud verfasserin aut Müller-Schlüter, Karen verfasserin aut Noda, Anna H. verfasserin aut Ruf, Susanne verfasserin aut Sauter, Matthias verfasserin aut Schlump, Jan-Ulrich verfasserin aut Syrbe, Steffen 1976- verfasserin (DE-588)133581926 (DE-627)691603138 (DE-576)272999482 aut Thiels, Charlotte verfasserin aut Trollmann, Regina verfasserin aut Wilken, Bernd verfasserin aut Zöllner, Johann Philipp verfasserin aut Rosenow, Felix verfasserin aut Strzelczyk, Adam verfasserin aut Enthalten in European journal of paediatric neurology Burlington, Mass. : Harcourt, 1997 35(2021), Seite 111-122 Online-Ressource (DE-627)320475417 (DE-600)2009085-7 (DE-576)26776183X 1532-2130 nnns volume:35 year:2021 pages:111-122 extent:12 https://doi.org/10.1016/j.ejpn.2021.10.003 Verlag Resolving-System lizenzpflichtig Volltext https://www.sciencedirect.com/science/article/pii/S1090379821001859 Verlag lizenzpflichtig Volltext GBV_USEFLAG_U GBV_ILN_2013 ISIL_DE-16-250 SYSFLAG_1 GBV_KXP SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2088 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4046 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 AR 35 2021 111-122 12 2013 01 DE-16-250 4048028863 00 --%%-- --%%-- --%%-- --%%-- l01 29-01-22 2013 01 DE-16-250 00 s hd2021 2013 01 DE-16-250 01 s (DE-627)1410508463 wissenschaftlicher Artikel (Zeitschrift) 2013 01 DE-16-250 02 s per_36 2013 01 DE-16-250 03 s s_12 2013 01 DE-16-250 04 p (DE-627)1568105673 Syrbe, Steffen 2013 01 DE-16-250 04 k (DE-627)1416740988 Zentrum für Kinder- und Jugendmedizin 2013 01 DE-16-250 04 k (DE-627)1416466967 Medizinische Fakultät Heidelberg 2013 01 DE-16-250 04 s (DE-627)1410501914 Verfasser 2013 01 DE-16-250 04 s pos_30 |
| spelling |
10.1016/j.ejpn.2021.10.003 doi (DE-627)1787761347 (DE-599)KXP1787761347 (OCoLC)1341439497 DE-627 ger DE-627 rda eng Willems, Laurent 1988- verfasserin (DE-588)1091093849 (DE-627)852169701 (DE-576)461242524 aut Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk 7 October 2021 12 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Gesehen am 29.01.2022 Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Angiomyolipoma Depression Epilepsy Seizure TSC Schubert-Bast, Susanne verfasserin aut Grau, Janina verfasserin aut Hertzberg, Christoph verfasserin aut Kurlemann, Gerhard verfasserin aut Wiemer-Kruel, Adelheid verfasserin aut Bast, Thomas verfasserin aut Bertsche, Astrid verfasserin aut Bettendorf, Ulrich verfasserin aut Fiedler, Barbara verfasserin aut Hahn, Andreas verfasserin aut Hartmann, Hans verfasserin aut Hornemann, Frauke verfasserin aut Immisch, Ilka verfasserin aut Jacobs, Julia verfasserin aut Kieslich, Matthias verfasserin aut Klein, Karl Martin verfasserin aut Klotz, Kerstin A. verfasserin aut Kluger, Gerhard verfasserin aut Knuf, Markus verfasserin aut Mayer, Thomas verfasserin aut Marquard, Klaus verfasserin aut Meyer, Sascha verfasserin aut Muhle, Hiltrud verfasserin aut Müller-Schlüter, Karen verfasserin aut Noda, Anna H. verfasserin aut Ruf, Susanne verfasserin aut Sauter, Matthias verfasserin aut Schlump, Jan-Ulrich verfasserin aut Syrbe, Steffen 1976- verfasserin (DE-588)133581926 (DE-627)691603138 (DE-576)272999482 aut Thiels, Charlotte verfasserin aut Trollmann, Regina verfasserin aut Wilken, Bernd verfasserin aut Zöllner, Johann Philipp verfasserin aut Rosenow, Felix verfasserin aut Strzelczyk, Adam verfasserin aut Enthalten in European journal of paediatric neurology Burlington, Mass. : Harcourt, 1997 35(2021), Seite 111-122 Online-Ressource (DE-627)320475417 (DE-600)2009085-7 (DE-576)26776183X 1532-2130 nnns volume:35 year:2021 pages:111-122 extent:12 https://doi.org/10.1016/j.ejpn.2021.10.003 Verlag Resolving-System lizenzpflichtig Volltext https://www.sciencedirect.com/science/article/pii/S1090379821001859 Verlag lizenzpflichtig Volltext GBV_USEFLAG_U GBV_ILN_2013 ISIL_DE-16-250 SYSFLAG_1 GBV_KXP SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2088 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4046 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 AR 35 2021 111-122 12 2013 01 DE-16-250 4048028863 00 --%%-- --%%-- --%%-- --%%-- l01 29-01-22 2013 01 DE-16-250 00 s hd2021 2013 01 DE-16-250 01 s (DE-627)1410508463 wissenschaftlicher Artikel (Zeitschrift) 2013 01 DE-16-250 02 s per_36 2013 01 DE-16-250 03 s s_12 2013 01 DE-16-250 04 p (DE-627)1568105673 Syrbe, Steffen 2013 01 DE-16-250 04 k (DE-627)1416740988 Zentrum für Kinder- und Jugendmedizin 2013 01 DE-16-250 04 k (DE-627)1416466967 Medizinische Fakultät Heidelberg 2013 01 DE-16-250 04 s (DE-627)1410501914 Verfasser 2013 01 DE-16-250 04 s pos_30 |
| allfields_unstemmed |
10.1016/j.ejpn.2021.10.003 doi (DE-627)1787761347 (DE-599)KXP1787761347 (OCoLC)1341439497 DE-627 ger DE-627 rda eng Willems, Laurent 1988- verfasserin (DE-588)1091093849 (DE-627)852169701 (DE-576)461242524 aut Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk 7 October 2021 12 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Gesehen am 29.01.2022 Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Angiomyolipoma Depression Epilepsy Seizure TSC Schubert-Bast, Susanne verfasserin aut Grau, Janina verfasserin aut Hertzberg, Christoph verfasserin aut Kurlemann, Gerhard verfasserin aut Wiemer-Kruel, Adelheid verfasserin aut Bast, Thomas verfasserin aut Bertsche, Astrid verfasserin aut Bettendorf, Ulrich verfasserin aut Fiedler, Barbara verfasserin aut Hahn, Andreas verfasserin aut Hartmann, Hans verfasserin aut Hornemann, Frauke verfasserin aut Immisch, Ilka verfasserin aut Jacobs, Julia verfasserin aut Kieslich, Matthias verfasserin aut Klein, Karl Martin verfasserin aut Klotz, Kerstin A. verfasserin aut Kluger, Gerhard verfasserin aut Knuf, Markus verfasserin aut Mayer, Thomas verfasserin aut Marquard, Klaus verfasserin aut Meyer, Sascha verfasserin aut Muhle, Hiltrud verfasserin aut Müller-Schlüter, Karen verfasserin aut Noda, Anna H. verfasserin aut Ruf, Susanne verfasserin aut Sauter, Matthias verfasserin aut Schlump, Jan-Ulrich verfasserin aut Syrbe, Steffen 1976- verfasserin (DE-588)133581926 (DE-627)691603138 (DE-576)272999482 aut Thiels, Charlotte verfasserin aut Trollmann, Regina verfasserin aut Wilken, Bernd verfasserin aut Zöllner, Johann Philipp verfasserin aut Rosenow, Felix verfasserin aut Strzelczyk, Adam verfasserin aut Enthalten in European journal of paediatric neurology Burlington, Mass. : Harcourt, 1997 35(2021), Seite 111-122 Online-Ressource (DE-627)320475417 (DE-600)2009085-7 (DE-576)26776183X 1532-2130 nnns volume:35 year:2021 pages:111-122 extent:12 https://doi.org/10.1016/j.ejpn.2021.10.003 Verlag Resolving-System lizenzpflichtig Volltext https://www.sciencedirect.com/science/article/pii/S1090379821001859 Verlag lizenzpflichtig Volltext GBV_USEFLAG_U GBV_ILN_2013 ISIL_DE-16-250 SYSFLAG_1 GBV_KXP SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2088 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4046 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 AR 35 2021 111-122 12 2013 01 DE-16-250 4048028863 00 --%%-- --%%-- --%%-- --%%-- l01 29-01-22 2013 01 DE-16-250 00 s hd2021 2013 01 DE-16-250 01 s (DE-627)1410508463 wissenschaftlicher Artikel (Zeitschrift) 2013 01 DE-16-250 02 s per_36 2013 01 DE-16-250 03 s s_12 2013 01 DE-16-250 04 p (DE-627)1568105673 Syrbe, Steffen 2013 01 DE-16-250 04 k (DE-627)1416740988 Zentrum für Kinder- und Jugendmedizin 2013 01 DE-16-250 04 k (DE-627)1416466967 Medizinische Fakultät Heidelberg 2013 01 DE-16-250 04 s (DE-627)1410501914 Verfasser 2013 01 DE-16-250 04 s pos_30 |
| allfieldsGer |
10.1016/j.ejpn.2021.10.003 doi (DE-627)1787761347 (DE-599)KXP1787761347 (OCoLC)1341439497 DE-627 ger DE-627 rda eng Willems, Laurent 1988- verfasserin (DE-588)1091093849 (DE-627)852169701 (DE-576)461242524 aut Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk 7 October 2021 12 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Gesehen am 29.01.2022 Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Angiomyolipoma Depression Epilepsy Seizure TSC Schubert-Bast, Susanne verfasserin aut Grau, Janina verfasserin aut Hertzberg, Christoph verfasserin aut Kurlemann, Gerhard verfasserin aut Wiemer-Kruel, Adelheid verfasserin aut Bast, Thomas verfasserin aut Bertsche, Astrid verfasserin aut Bettendorf, Ulrich verfasserin aut Fiedler, Barbara verfasserin aut Hahn, Andreas verfasserin aut Hartmann, Hans verfasserin aut Hornemann, Frauke verfasserin aut Immisch, Ilka verfasserin aut Jacobs, Julia verfasserin aut Kieslich, Matthias verfasserin aut Klein, Karl Martin verfasserin aut Klotz, Kerstin A. verfasserin aut Kluger, Gerhard verfasserin aut Knuf, Markus verfasserin aut Mayer, Thomas verfasserin aut Marquard, Klaus verfasserin aut Meyer, Sascha verfasserin aut Muhle, Hiltrud verfasserin aut Müller-Schlüter, Karen verfasserin aut Noda, Anna H. verfasserin aut Ruf, Susanne verfasserin aut Sauter, Matthias verfasserin aut Schlump, Jan-Ulrich verfasserin aut Syrbe, Steffen 1976- verfasserin (DE-588)133581926 (DE-627)691603138 (DE-576)272999482 aut Thiels, Charlotte verfasserin aut Trollmann, Regina verfasserin aut Wilken, Bernd verfasserin aut Zöllner, Johann Philipp verfasserin aut Rosenow, Felix verfasserin aut Strzelczyk, Adam verfasserin aut Enthalten in European journal of paediatric neurology Burlington, Mass. : Harcourt, 1997 35(2021), Seite 111-122 Online-Ressource (DE-627)320475417 (DE-600)2009085-7 (DE-576)26776183X 1532-2130 nnns volume:35 year:2021 pages:111-122 extent:12 https://doi.org/10.1016/j.ejpn.2021.10.003 Verlag Resolving-System lizenzpflichtig Volltext https://www.sciencedirect.com/science/article/pii/S1090379821001859 Verlag lizenzpflichtig Volltext GBV_USEFLAG_U GBV_ILN_2013 ISIL_DE-16-250 SYSFLAG_1 GBV_KXP SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2088 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4046 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 AR 35 2021 111-122 12 2013 01 DE-16-250 4048028863 00 --%%-- --%%-- --%%-- --%%-- l01 29-01-22 2013 01 DE-16-250 00 s hd2021 2013 01 DE-16-250 01 s (DE-627)1410508463 wissenschaftlicher Artikel (Zeitschrift) 2013 01 DE-16-250 02 s per_36 2013 01 DE-16-250 03 s s_12 2013 01 DE-16-250 04 p (DE-627)1568105673 Syrbe, Steffen 2013 01 DE-16-250 04 k (DE-627)1416740988 Zentrum für Kinder- und Jugendmedizin 2013 01 DE-16-250 04 k (DE-627)1416466967 Medizinische Fakultät Heidelberg 2013 01 DE-16-250 04 s (DE-627)1410501914 Verfasser 2013 01 DE-16-250 04 s pos_30 |
| allfieldsSound |
10.1016/j.ejpn.2021.10.003 doi (DE-627)1787761347 (DE-599)KXP1787761347 (OCoLC)1341439497 DE-627 ger DE-627 rda eng Willems, Laurent 1988- verfasserin (DE-588)1091093849 (DE-627)852169701 (DE-576)461242524 aut Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk 7 October 2021 12 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier Gesehen am 29.01.2022 Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Angiomyolipoma Depression Epilepsy Seizure TSC Schubert-Bast, Susanne verfasserin aut Grau, Janina verfasserin aut Hertzberg, Christoph verfasserin aut Kurlemann, Gerhard verfasserin aut Wiemer-Kruel, Adelheid verfasserin aut Bast, Thomas verfasserin aut Bertsche, Astrid verfasserin aut Bettendorf, Ulrich verfasserin aut Fiedler, Barbara verfasserin aut Hahn, Andreas verfasserin aut Hartmann, Hans verfasserin aut Hornemann, Frauke verfasserin aut Immisch, Ilka verfasserin aut Jacobs, Julia verfasserin aut Kieslich, Matthias verfasserin aut Klein, Karl Martin verfasserin aut Klotz, Kerstin A. verfasserin aut Kluger, Gerhard verfasserin aut Knuf, Markus verfasserin aut Mayer, Thomas verfasserin aut Marquard, Klaus verfasserin aut Meyer, Sascha verfasserin aut Muhle, Hiltrud verfasserin aut Müller-Schlüter, Karen verfasserin aut Noda, Anna H. verfasserin aut Ruf, Susanne verfasserin aut Sauter, Matthias verfasserin aut Schlump, Jan-Ulrich verfasserin aut Syrbe, Steffen 1976- verfasserin (DE-588)133581926 (DE-627)691603138 (DE-576)272999482 aut Thiels, Charlotte verfasserin aut Trollmann, Regina verfasserin aut Wilken, Bernd verfasserin aut Zöllner, Johann Philipp verfasserin aut Rosenow, Felix verfasserin aut Strzelczyk, Adam verfasserin aut Enthalten in European journal of paediatric neurology Burlington, Mass. : Harcourt, 1997 35(2021), Seite 111-122 Online-Ressource (DE-627)320475417 (DE-600)2009085-7 (DE-576)26776183X 1532-2130 nnns volume:35 year:2021 pages:111-122 extent:12 https://doi.org/10.1016/j.ejpn.2021.10.003 Verlag Resolving-System lizenzpflichtig Volltext https://www.sciencedirect.com/science/article/pii/S1090379821001859 Verlag lizenzpflichtig Volltext GBV_USEFLAG_U GBV_ILN_2013 ISIL_DE-16-250 SYSFLAG_1 GBV_KXP SSG-OLC-PHA GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_32 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_90 GBV_ILN_95 GBV_ILN_100 GBV_ILN_101 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_224 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2003 GBV_ILN_2004 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2027 GBV_ILN_2034 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2049 GBV_ILN_2050 GBV_ILN_2056 GBV_ILN_2059 GBV_ILN_2061 GBV_ILN_2064 GBV_ILN_2065 GBV_ILN_2068 GBV_ILN_2088 GBV_ILN_2111 GBV_ILN_2112 GBV_ILN_2113 GBV_ILN_2118 GBV_ILN_2122 GBV_ILN_2129 GBV_ILN_2143 GBV_ILN_2147 GBV_ILN_2148 GBV_ILN_2152 GBV_ILN_2153 GBV_ILN_2190 GBV_ILN_2336 GBV_ILN_2470 GBV_ILN_2507 GBV_ILN_2522 GBV_ILN_4035 GBV_ILN_4037 GBV_ILN_4046 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4251 GBV_ILN_4305 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4326 GBV_ILN_4333 GBV_ILN_4334 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4393 AR 35 2021 111-122 12 2013 01 DE-16-250 4048028863 00 --%%-- --%%-- --%%-- --%%-- l01 29-01-22 2013 01 DE-16-250 00 s hd2021 2013 01 DE-16-250 01 s (DE-627)1410508463 wissenschaftlicher Artikel (Zeitschrift) 2013 01 DE-16-250 02 s per_36 2013 01 DE-16-250 03 s s_12 2013 01 DE-16-250 04 p (DE-627)1568105673 Syrbe, Steffen 2013 01 DE-16-250 04 k (DE-627)1416740988 Zentrum für Kinder- und Jugendmedizin 2013 01 DE-16-250 04 k (DE-627)1416466967 Medizinische Fakultät Heidelberg 2013 01 DE-16-250 04 s (DE-627)1410501914 Verfasser 2013 01 DE-16-250 04 s pos_30 |
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Willems, Laurent @@aut@@ Schubert-Bast, Susanne @@aut@@ Grau, Janina @@aut@@ Hertzberg, Christoph @@aut@@ Kurlemann, Gerhard @@aut@@ Wiemer-Kruel, Adelheid @@aut@@ Bast, Thomas @@aut@@ Bertsche, Astrid @@aut@@ Bettendorf, Ulrich @@aut@@ Fiedler, Barbara @@aut@@ Hahn, Andreas @@aut@@ Hartmann, Hans @@aut@@ Hornemann, Frauke @@aut@@ Immisch, Ilka @@aut@@ Jacobs, Julia @@aut@@ Kieslich, Matthias @@aut@@ Klein, Karl Martin @@aut@@ Klotz, Kerstin A. @@aut@@ Kluger, Gerhard @@aut@@ Knuf, Markus @@aut@@ Mayer, Thomas @@aut@@ Marquard, Klaus @@aut@@ Meyer, Sascha @@aut@@ Muhle, Hiltrud @@aut@@ Müller-Schlüter, Karen @@aut@@ Noda, Anna H. @@aut@@ Ruf, Susanne @@aut@@ Sauter, Matthias @@aut@@ Schlump, Jan-Ulrich @@aut@@ Syrbe, Steffen @@aut@@ Thiels, Charlotte @@aut@@ Trollmann, Regina @@aut@@ Wilken, Bernd @@aut@@ Zöllner, Johann Philipp @@aut@@ Rosenow, Felix @@aut@@ Strzelczyk, Adam @@aut@@ |
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Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk</subfield></datafield><datafield tag="264" ind1=" " ind2="1"><subfield code="c">7 October 2021</subfield></datafield><datafield tag="300" ind1=" " ind2=" "><subfield code="a">12</subfield></datafield><datafield tag="336" ind1=" " ind2=" "><subfield code="a">Text</subfield><subfield code="b">txt</subfield><subfield code="2">rdacontent</subfield></datafield><datafield tag="337" ind1=" " ind2=" "><subfield code="a">Computermedien</subfield><subfield code="b">c</subfield><subfield code="2">rdamedia</subfield></datafield><datafield tag="338" ind1=" " ind2=" "><subfield code="a">Online-Ressource</subfield><subfield code="b">cr</subfield><subfield code="2">rdacarrier</subfield></datafield><datafield tag="500" ind1=" " ind2=" "><subfield code="a">Gesehen am 29.01.2022</subfield></datafield><datafield tag="520" ind1=" " ind2=" "><subfield code="a">Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. 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Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany Laurent M. Willems, Susanne Schubert-Bast, Janina Grau, Christoph Hertzberg, Gerhard Kurlemann, Adelheid Wiemer-Kruel, Thomas Bast, Astrid Bertsche, Ulrich Bettendorf, Barbara Fiedler, Andreas Hahn, Hans Hartmann, Frauke Hornemann, Ilka Immisch, Julia Jacobs, Matthias Kieslich, Karl Martin Klein, Kerstin A. Klotz, Gerhard Kluger, Markus Knuf, Thomas Mayer, Klaus Marquard, Sascha Meyer, Hiltrud Muhle, Karen Müller-Schlüter, Anna H. Noda, Susanne Ruf, Matthias Sauter, Jan-Ulrich Schlump, Steffen Syrbe, Charlotte Thiels, Regina Trollmann, Bernd Wilken, Johann Philipp Zöllner, Felix Rosenow, Adam Strzelczyk |
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Willems, Laurent Schubert-Bast, Susanne Grau, Janina Hertzberg, Christoph Kurlemann, Gerhard Wiemer-Kruel, Adelheid Bast, Thomas Bertsche, Astrid Bettendorf, Ulrich Fiedler, Barbara Hahn, Andreas Hartmann, Hans Hornemann, Frauke Immisch, Ilka Jacobs, Julia Kieslich, Matthias Klein, Karl Martin Klotz, Kerstin A. Kluger, Gerhard Knuf, Markus Mayer, Thomas Marquard, Klaus Meyer, Sascha Muhle, Hiltrud Müller-Schlüter, Karen Noda, Anna H. Ruf, Susanne Sauter, Matthias Schlump, Jan-Ulrich Syrbe, Steffen Thiels, Charlotte Trollmann, Regina Wilken, Bernd Zöllner, Johann Philipp Rosenow, Felix Strzelczyk, Adam |
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a multicentre cohort study from Germany |
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health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregiversa multicentre cohort study from germany |
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Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers a multicentre cohort study from Germany |
| abstract |
Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Gesehen am 29.01.2022 |
| abstractGer |
Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Gesehen am 29.01.2022 |
| abstract_unstemmed |
Objective - This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers. - Methods - Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDLR) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation. - Results - The mean HRQOL score was 67.9 ± 12.7, and significantly lower values were associated with increasing age, attending special needs education, TSC-associated psychiatric symptoms, and drug-related adverse events. The mean QOL of caregivers was 85.4 ± 15.7, and caregiver's sex, TSC mutation locus, familial TSC clustering, special needs education, degree of disability, care dependency, presence of TSC-associated psychiatric symptoms, and TSC severity were significant predictors of lower QOL. Depressive symptoms were identified in 45.7% of caregivers, associated with female sex of the caregiver, familial TSC clustering, special needs education, and presence of TSC-associated psychiatric symptoms of the child. Multivariate regression analysis revealed adolescence and drug-related adverse events as significant predictors for lower HRQOL in TSC children, and TSC2 variants predicted lower QOL and depressive symptoms in caregivers. - Conclusion - Compared with other chronic diseases, such as headache, diabetes or obesity, children with TSC have significantly lower HRQOL, which further decreases during adolescence. A decreased HRQOL of patients correlates with a lower QOL and increased symptoms of depression of their caregivers. These results may improve the comprehensive therapy and care of children and adolescents with TSC and their families and caregivers. - Trial registration - DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045. Gesehen am 29.01.2022 |
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| title_short |
Health-related quality of life in children and adolescents with tuberous sclerosis complex and their caregivers |
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https://doi.org/10.1016/j.ejpn.2021.10.003 https://www.sciencedirect.com/science/article/pii/S1090379821001859 |
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Schubert-Bast, Susanne Grau, Janina Hertzberg, Christoph Kurlemann, Gerhard Wiemer-Kruel, Adelheid Bast, Thomas Bertsche, Astrid Bettendorf, Ulrich Fiedler, Barbara Hahn, Andreas Hartmann, Hans Hornemann, Frauke Immisch, Ilka Jacobs, Julia Kieslich, Matthias Klein, Karl Martin Klotz, Kerstin A. Kluger, Gerhard Knuf, Markus Mayer, Thomas Marquard, Klaus Meyer, Sascha Muhle, Hiltrud Müller-Schlüter, Karen Noda, Anna H. Ruf, Susanne Sauter, Matthias Schlump, Jan-Ulrich Syrbe, Steffen 1976- Thiels, Charlotte Trollmann, Regina Wilken, Bernd Zöllner, Johann Philipp Rosenow, Felix Strzelczyk, Adam |
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Schubert-Bast, Susanne Grau, Janina Hertzberg, Christoph Kurlemann, Gerhard Wiemer-Kruel, Adelheid Bast, Thomas Bertsche, Astrid Bettendorf, Ulrich Fiedler, Barbara Hahn, Andreas Hartmann, Hans Hornemann, Frauke Immisch, Ilka Jacobs, Julia Kieslich, Matthias Klein, Karl Martin Klotz, Kerstin A. Kluger, Gerhard Knuf, Markus Mayer, Thomas Marquard, Klaus Meyer, Sascha Muhle, Hiltrud Müller-Schlüter, Karen Noda, Anna H. Ruf, Susanne Sauter, Matthias Schlump, Jan-Ulrich Syrbe, Steffen 1976- Thiels, Charlotte Trollmann, Regina Wilken, Bernd Zöllner, Johann Philipp Rosenow, Felix Strzelczyk, Adam |
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Willems, Laurent M. Willems, Laurent Maximilian Willems, Laurent Syrbe, Steffen |
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10.1016/j.ejpn.2021.10.003 |
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