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Development and validation of TreatHSP-QoL: a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegia

Hereditary spastic paraplegia (HSP) is a rare neurodegenerative disease that lacks specific and validated patient-centered outcome measures (PCOMs). We aimed to develop and validate a health-related quality of life (HRQoL) questionnaire specific to HSP (“TreatHSP-QoL”) that could be used as a PCOM....

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Bibliographische Detailangaben
Hauptverfasser: Malina, Jekaterina (VerfasserIn) , Huessler, Eva-Maria (VerfasserIn) , Jöckel, Karl-Heinz (VerfasserIn) , Boog-Whiteside, Eva (VerfasserIn) , Jeschonneck, Nicole (VerfasserIn) , Schröder, Bernadette (VerfasserIn) , Schüle-Freyer, Rebecca (VerfasserIn) , Kühl, Tobias Hans-Jürgen (VerfasserIn) , Klebe, Stephan (VerfasserIn)
Dokumenttyp: Article (Journal)
Sprache:Englisch
Veröffentlicht: 02 January 2024
In: Orphanet journal of rare diseases
Year: 2024, Jahrgang: 19, Pages: 1-14
ISSN:1750-1172
DOI:10.1186/s13023-023-03012-w
Online-Zugang:Verlag, kostenfrei, Volltext: https://doi.org/10.1186/s13023-023-03012-w
Verlag, kostenfrei, Volltext: https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-03012-w
Volltext
Verfasserangaben:Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl and Stephan Klebe
Beschreibung
Zusammenfassung:Hereditary spastic paraplegia (HSP) is a rare neurodegenerative disease that lacks specific and validated patient-centered outcome measures (PCOMs). We aimed to develop and validate a health-related quality of life (HRQoL) questionnaire specific to HSP (“TreatHSP-QoL”) that could be used as a PCOM.
Beschreibung:Gesehen am 14.03.2024
Beschreibung:Online Resource
ISSN:1750-1172
DOI:10.1186/s13023-023-03012-w

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