Abstract
Background: There is a need for patient-reported outcome measures that capture the impact that motor impairments have on health-related quality of life in individuals with Huntington's disease. Objectives: The objectives of this study were to establish the reliability and validity of new physical functioning patient-reported outcome measures in Huntington's disease. Methods: A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health-Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician-rated and generic self-report measures were also administered. Results: Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α >.92). Convergent, discriminant validity and known group validity was supported. Conclusions: The results provide psychometric support for new patient-reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 1096-1102 |
| Number of pages | 7 |
| Journal | Movement Disorders |
| Volume | 32 |
| Issue number | 7 |
| DOIs | |
| State | Published - Jul 1 2017 |
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Keywords
- HDQLIFE
- Huntington's disease
- Neuro-QoL
- chorea
- health-related quality of life
- motor symptoms
- patient-reported outcome (PRO)
- physical functioning
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
Cite this
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Patient-reported outcomes in Huntington's disease : Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures. / Carlozzi, Noelle E.; Ready, Rebecca E.; Frank, Samuel; Cella, David; Hahn, Elizabeth A; Goodnight, Siera M.; Schilling, Stephen G.; Boileau, Nicholas R.; Dayalu, Praveen.
In: Movement Disorders, Vol. 32, No. 7, 01.07.2017, p. 1096-1102.Research output: Contribution to journal › Article
TY - JOUR
T1 - Patient-reported outcomes in Huntington's disease
T2 - Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures
AU - Carlozzi, Noelle E.
AU - Ready, Rebecca E.
AU - Frank, Samuel
AU - Cella, David
AU - Hahn, Elizabeth A
AU - Goodnight, Siera M.
AU - Schilling, Stephen G.
AU - Boileau, Nicholas R.
AU - Dayalu, Praveen
PY - 2017/7/1
Y1 - 2017/7/1
N2 - Background: There is a need for patient-reported outcome measures that capture the impact that motor impairments have on health-related quality of life in individuals with Huntington's disease. Objectives: The objectives of this study were to establish the reliability and validity of new physical functioning patient-reported outcome measures in Huntington's disease. Methods: A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health-Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician-rated and generic self-report measures were also administered. Results: Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α >.92). Convergent, discriminant validity and known group validity was supported. Conclusions: The results provide psychometric support for new patient-reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice.
AB - Background: There is a need for patient-reported outcome measures that capture the impact that motor impairments have on health-related quality of life in individuals with Huntington's disease. Objectives: The objectives of this study were to establish the reliability and validity of new physical functioning patient-reported outcome measures in Huntington's disease. Methods: A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health-Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician-rated and generic self-report measures were also administered. Results: Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α >.92). Convergent, discriminant validity and known group validity was supported. Conclusions: The results provide psychometric support for new patient-reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice.
KW - HDQLIFE
KW - Huntington's disease
KW - Neuro-QoL
KW - chorea
KW - health-related quality of life
KW - motor symptoms
KW - patient-reported outcome (PRO)
KW - physical functioning
UR - http://www.scopus.com/inward/record.url?scp=85019938110&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85019938110&partnerID=8YFLogxK
U2 - 10.1002/mds.27046
DO - 10.1002/mds.27046
M3 - Article
VL - 32
SP - 1096
EP - 1102
JO - Movement Disorders
JF - Movement Disorders
SN - 0885-3185
IS - 7
ER -