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....
Gespeichert in:
| Hauptverfasser: | , , , , , , , , |
|---|---|
| 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 |
| Verfasserangaben: | Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl and Stephan Klebe |
MARC
| LEADER | 00000caa a2200000 c 4500 | ||
|---|---|---|---|
| 001 | 1883450780 | ||
| 003 | DE-627 | ||
| 005 | 20241209084944.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 240314s2024 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1186/s13023-023-03012-w |2 doi | |
| 035 | |a (DE-627)1883450780 | ||
| 035 | |a (DE-599)KXP1883450780 | ||
| 035 | |a (OCoLC)1443645612 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rda | ||
| 041 | |a eng | ||
| 084 | |a 33 |2 sdnb | ||
| 100 | 1 | |a Malina, Jekaterina |e VerfasserIn |0 (DE-588)1323484124 |0 (DE-627)1883452015 |4 aut | |
| 245 | 1 | 0 | |a Development and validation of TreatHSP-QoL |b a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegia |c Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl and Stephan Klebe |
| 264 | 1 | |c 02 January 2024 | |
| 300 | |b Illustrationen | ||
| 300 | |a 14 | ||
| 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 14.03.2024 | ||
| 520 | |a 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. | ||
| 650 | 4 | |a Health-related quality of life | |
| 650 | 4 | |a Hereditary spastic paraplegia | |
| 650 | 4 | |a Patient-centered outcome measure | |
| 700 | 1 | |a Huessler, Eva-Maria |e VerfasserIn |4 aut | |
| 700 | 1 | |a Jöckel, Karl-Heinz |e VerfasserIn |0 (DE-588)171154290 |0 (DE-627)061325945 |0 (DE-576)131971042 |4 aut | |
| 700 | 1 | |a Boog-Whiteside, Eva |e VerfasserIn |4 aut | |
| 700 | 1 | |a Jeschonneck, Nicole |e VerfasserIn |4 aut | |
| 700 | 1 | |a Schröder, Bernadette |e VerfasserIn |4 aut | |
| 700 | 1 | |a Schüle-Freyer, Rebecca |d 1975- |e VerfasserIn |0 (DE-588)137544472 |0 (DE-627)695848283 |0 (DE-576)30411118X |4 aut | |
| 700 | 1 | |a Kühl, Tobias Hans-Jürgen |d 1987- |e VerfasserIn |0 (DE-588)1081264004 |0 (DE-627)845730819 |0 (DE-576)45407557X |4 aut | |
| 700 | 1 | |a Klebe, Stephan |d 1971- |e VerfasserIn |0 (DE-588)123761743 |0 (DE-627)082751900 |0 (DE-576)293865906 |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Orphanet journal of rare diseases |d London : BioMed Central, 2006 |g 19(2024), Artikel-ID 2, Seite 1-14 |h Online-Ressource |w (DE-627)50900637X |w (DE-600)2225857-7 |w (DE-576)260614424 |x 1750-1172 |7 nnas |a Development and validation of TreatHSP-QoL a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegia |
| 773 | 1 | 8 | |g volume:19 |g year:2024 |g elocationid:2 |g pages:1-14 |g extent:14 |a Development and validation of TreatHSP-QoL a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegia |
| 856 | 4 | 0 | |u https://doi.org/10.1186/s13023-023-03012-w |x Verlag |x Resolving-System |z kostenfrei |3 Volltext |
| 856 | 4 | 0 | |u https://ojrd.biomedcentral.com/articles/10.1186/s13023-023-03012-w |x Verlag |z kostenfrei |3 Volltext |
| 951 | |a AR | ||
| 992 | |a 20240314 | ||
| 993 | |a Article | ||
| 994 | |a 2024 | ||
| 998 | |g 137544472 |a Schüle-Freyer, Rebecca |m 137544472:Schüle-Freyer, Rebecca |d 910000 |d 911100 |e 910000PS137544472 |e 911100PS137544472 |k 0/910000/ |k 1/910000/911100/ |p 7 | ||
| 999 | |a KXP-PPN1883450780 |e 4500294988 | ||
| BIB | |a Y | ||
| SER | |a journal | ||
| JSO | |a {"language":["eng"],"name":{"displayForm":["Jekaterina Malina, Eva-Maria Huessler, Karl-Heinz Jöckel, Eva Boog-Whiteside, Nicole Jeschonneck, Bernadette Schröder, Rebecca Schüle, Tobias Kühl and Stephan Klebe"]},"note":["Gesehen am 14.03.2024"],"recId":"1883450780","person":[{"role":"aut","family":"Malina","given":"Jekaterina","display":"Malina, Jekaterina"},{"display":"Huessler, Eva-Maria","given":"Eva-Maria","role":"aut","family":"Huessler"},{"role":"aut","family":"Jöckel","given":"Karl-Heinz","display":"Jöckel, Karl-Heinz"},{"family":"Boog-Whiteside","role":"aut","display":"Boog-Whiteside, Eva","given":"Eva"},{"family":"Jeschonneck","role":"aut","display":"Jeschonneck, Nicole","given":"Nicole"},{"display":"Schröder, Bernadette","given":"Bernadette","family":"Schröder","role":"aut"},{"role":"aut","family":"Schüle-Freyer","display":"Schüle-Freyer, Rebecca","given":"Rebecca"},{"display":"Kühl, Tobias Hans-Jürgen","given":"Tobias Hans-Jürgen","role":"aut","family":"Kühl"},{"family":"Klebe","role":"aut","display":"Klebe, Stephan","given":"Stephan"}],"id":{"eki":["1883450780"],"doi":["10.1186/s13023-023-03012-w"]},"physDesc":[{"noteIll":"Illustrationen","extent":"14 S."}],"title":[{"title":"Development and validation of TreatHSP-QoL","subtitle":"a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegia","title_sort":"Development and validation of TreatHSP-QoL"}],"type":{"media":"Online-Ressource","bibl":"article-journal"},"origin":[{"dateIssuedDisp":"02 January 2024","dateIssuedKey":"2024"}],"relHost":[{"recId":"50900637X","origin":[{"publisherPlace":"London","dateIssuedKey":"2006","dateIssuedDisp":"2006-","publisher":"BioMed Central"}],"id":{"issn":["1750-1172"],"eki":["50900637X"],"zdb":["2225857-7"]},"physDesc":[{"extent":"Online-Ressource"}],"title":[{"title_sort":"Orphanet journal of rare diseases","title":"Orphanet journal of rare diseases","subtitle":"OJRD"}],"note":["Gesehen am 01.09.10"],"pubHistory":["1.2006 -"],"part":{"pages":"1-14","extent":"14","text":"19(2024), Artikel-ID 2, Seite 1-14","year":"2024","volume":"19"},"language":["eng"],"disp":"Development and validation of TreatHSP-QoL a patient-reported outcome measure for health-related quality of life in hereditary spastic paraplegiaOrphanet journal of rare diseases","type":{"media":"Online-Ressource","bibl":"periodical"}}]} | ||
| SRT | |a MALINAJEKADEVELOPMEN0220 | ||