Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients

Due to limited treatment options, managing symptoms has dominated care for Spinocerebellar Ataxia (SCA). Little attention has been given to health-related quality of life (HRQoL) and depressive symptoms experienced by patients across disease duration.

Gespeichert in:
Bibliographische Detailangaben
Hauptverfasser: Iskandar, Audrey (VerfasserIn) , Buchholz, Maresa (VerfasserIn) , Blotenberg, Iris (VerfasserIn) , Schmitz-Hübsch, Tanja (VerfasserIn) , Faber, Jennifer (VerfasserIn) , Jacobi, Heike (VerfasserIn) , Xie, Feng (VerfasserIn) , Grobe-Einsler, Marcus (VerfasserIn) , Klockgether, Thomas (VerfasserIn) , Michalowsky, Bernhard (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: 09 April 2025
In: Journal of neurology
Year: 2025, Jahrgang: 272, Heft: 5, Pages: 1-13
ISSN:1432-1459
DOI:10.1007/s00415-025-13024-0
Online-Zugang:Verlag, kostenfrei, Volltext: https://doi.org/10.1007/s00415-025-13024-0
Volltext
Verfasserangaben:Audrey Iskandar, Maresa Buchholz, Iris Blotenberg, Tanja Schmitz-Hübsch, Jennifer Faber, Heike Jacobi, Feng Xie, Marcus Grobe-Einsler, Thomas Klockgether, Bernhard Michalowsky on behalf of ESMI and EUROSCA Study groups

MARC

LEADER 00000naa a2200000 c 4500
001 1938093593
003 DE-627
005 20251009105907.0
007 cr uuu---uuuuu
008 251009s2025 xx |||||o 00| ||eng c
024 7 |a 10.1007/s00415-025-13024-0  |2 doi 
035 |a (DE-627)1938093593 
035 |a (DE-599)KXP1938093593 
040 |a DE-627  |b ger  |c DE-627  |e rda 
041 |a eng 
084 |a 33  |2 sdnb 
100 1 |a Iskandar, Audrey  |e VerfasserIn  |0 (DE-588)1378575938  |0 (DE-627)1938094417  |4 aut 
245 1 0 |a Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients  |c Audrey Iskandar, Maresa Buchholz, Iris Blotenberg, Tanja Schmitz-Hübsch, Jennifer Faber, Heike Jacobi, Feng Xie, Marcus Grobe-Einsler, Thomas Klockgether, Bernhard Michalowsky on behalf of ESMI and EUROSCA Study groups 
264 1 |c 09 April 2025 
300 |b Diagramme 
300 |a 13 
336 |a Text  |b txt  |2 rdacontent 
337 |a Computermedien  |b c  |2 rdamedia 
338 |a Online-Ressource  |b cr  |2 rdacarrier 
500 |a Gesehen am 09.10.2025 
520 |a Due to limited treatment options, managing symptoms has dominated care for Spinocerebellar Ataxia (SCA). Little attention has been given to health-related quality of life (HRQoL) and depressive symptoms experienced by patients across disease duration. 
650 4 |a Ataxia 
650 4 |a Genetic disorder 
650 4 |a Health-related quality of life 
650 4 |a Patient-centered care 
650 4 |a Psychologic well-being 
650 4 |a Rare disease 
700 1 |a Buchholz, Maresa  |e VerfasserIn  |4 aut 
700 1 |a Blotenberg, Iris  |e VerfasserIn  |4 aut 
700 1 |a Schmitz-Hübsch, Tanja  |e VerfasserIn  |4 aut 
700 1 |a Faber, Jennifer  |e VerfasserIn  |4 aut 
700 1 |a Jacobi, Heike  |e VerfasserIn  |0 (DE-588)1163027812  |0 (DE-627)1027272150  |0 (DE-576)507747666  |4 aut 
700 1 |a Xie, Feng  |e VerfasserIn  |4 aut 
700 1 |a Grobe-Einsler, Marcus  |e VerfasserIn  |4 aut 
700 1 |a Klockgether, Thomas  |e VerfasserIn  |4 aut 
700 1 |a Michalowsky, Bernhard  |e VerfasserIn  |4 aut 
773 0 8 |i Enthalten in  |t Journal of neurology  |d [Darmstadt] : Steinkopff, 1974  |g 272(2025), 5, Artikel-ID 323, Seite 1-13  |h Online-Ressource  |w (DE-627)242065155  |w (DE-600)1421299-7  |w (DE-576)065026500  |x 1432-1459  |7 nnas  |a Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients 
773 1 8 |g volume:272  |g year:2025  |g number:5  |g elocationid:323  |g pages:1-13  |g extent:13  |a Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients 
856 4 0 |u https://doi.org/10.1007/s00415-025-13024-0  |x Verlag  |x Resolving-System  |z kostenfrei  |3 Volltext 
951 |a AR 
992 |a 20251009 
993 |a Article 
994 |a 2025 
998 |g 1163027812  |a Jacobi, Heike  |m 1163027812:Jacobi, Heike  |d 910000  |d 911100  |d 50000  |e 910000PJ1163027812  |e 911100PJ1163027812  |e 50000PJ1163027812  |k 0/910000/  |k 1/910000/911100/  |k 0/50000/  |p 6 
999 |a KXP-PPN1938093593  |e 4783522383 
BIB |a Y 
SER |a journal 
JSO |a {"origin":[{"dateIssuedDisp":"09 April 2025","dateIssuedKey":"2025"}],"relHost":[{"type":{"media":"Online-Ressource","bibl":"periodical"},"disp":"Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patientsJournal of neurology","language":["eng","ger"],"part":{"extent":"13","pages":"1-13","issue":"5","text":"272(2025), 5, Artikel-ID 323, Seite 1-13","volume":"272","year":"2025"},"pubHistory":["Volume 207, issue 1 (March 1974)-"],"note":["Gesehen am 14.03.25","Ungezählte Beil.: Supplement"],"title":[{"title_sort":"Journal of neurology","title":"Journal of neurology"}],"id":{"eki":["242065155"],"issn":["1432-1459"],"zdb":["1421299-7"]},"physDesc":[{"extent":"Online-Ressource"}],"origin":[{"dateIssuedKey":"1974","publisherPlace":"[Darmstadt] ; Berlin ; Heidelberg [u.a.] ; Darmstadt ; Heidelberg","publisher":"Steinkopff ; Springer ; Steinkopff [u.a.] ; Springer-Medizin-Verl.","dateIssuedDisp":"1974-"}],"recId":"242065155"}],"physDesc":[{"noteIll":"Diagramme","extent":"13 S."}],"id":{"eki":["1938093593"],"doi":["10.1007/s00415-025-13024-0"]},"title":[{"title_sort":"Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients","title":"Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients"}],"type":{"bibl":"article-journal","media":"Online-Ressource"},"note":["Gesehen am 09.10.2025"],"recId":"1938093593","person":[{"display":"Iskandar, Audrey","given":"Audrey","family":"Iskandar","role":"aut"},{"given":"Maresa","display":"Buchholz, Maresa","role":"aut","family":"Buchholz"},{"role":"aut","family":"Blotenberg","given":"Iris","display":"Blotenberg, Iris"},{"family":"Schmitz-Hübsch","role":"aut","display":"Schmitz-Hübsch, Tanja","given":"Tanja"},{"display":"Faber, Jennifer","given":"Jennifer","role":"aut","family":"Faber"},{"given":"Heike","display":"Jacobi, Heike","role":"aut","family":"Jacobi"},{"display":"Xie, Feng","given":"Feng","role":"aut","family":"Xie"},{"given":"Marcus","display":"Grobe-Einsler, Marcus","role":"aut","family":"Grobe-Einsler"},{"family":"Klockgether","role":"aut","given":"Thomas","display":"Klockgether, Thomas"},{"role":"aut","family":"Michalowsky","given":"Bernhard","display":"Michalowsky, Bernhard"}],"language":["eng"],"name":{"displayForm":["Audrey Iskandar, Maresa Buchholz, Iris Blotenberg, Tanja Schmitz-Hübsch, Jennifer Faber, Heike Jacobi, Feng Xie, Marcus Grobe-Einsler, Thomas Klockgether, Bernhard Michalowsky on behalf of ESMI and EUROSCA Study groups"]}} 
SRT |a ISKANDARAULONGITUDIN0920