دورية أكاديمية
HDQLIFE: Development and Assessment of Health-Related Quality of Life in Huntington Disease (HD)
| العنوان: | HDQLIFE: Development and Assessment of Health-Related Quality of Life in Huntington Disease (HD) |
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| المؤلفون: | Carlozzi, N E, Schilling, S G, Lai, J-S, Paulsen, J S, Hahn, E A, Perlmutter, J S, Ross, C A, Downing, N R, Kratz, A L, McCormack, M K, Nance, M A, Quaid, K A, Stout, J C, Gershon, R C, Ready, R E, Miner, J A, Barton, S K, Perlman, S L, Rao, S M, Frank, S, Shoulson, I, Marin, H, Geschwind, M D, Dayalu, P, Goodnight, S M, Cella, D |
| المصدر: | Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship |
| بيانات النشر: | Rowan Digital Works |
| سنة النشر: | 2016 |
| المجموعة: | Rowan University: Rowan Digital Works |
| مصطلحات موضوعية: | Adult, Huntington Disease, Sickness Impact Profile, Surveys and Questionnaires, HDQLIFE, Health-related quality of life, Neuro-QoL, PROMIS, Patient-reported outcome, Female, Humans, Male, Middle Aged, Congenital, Hereditary, and Neonatal Diseases and Abnormalities, Geriatrics, Gerontology, Medicine and Health, Medicine and Health Sciences, Nervous System Diseases, Neurology, Other Analytical, Diagnostic and Therapeutic Techniques and Equipment, Other Mental and Social Health |
| الوصف: | PURPOSE: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL-Quality of Life in Neurological Disorders and PROMIS-Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. METHODS: New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. RESULTS: Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. CONCLUSIONS: HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD. |
| نوع الوثيقة: | article in journal/newspaper |
| وصف الملف: | application/pdf |
| اللغة: | unknown |
| العلاقة: | https://rdw.rowan.edu/som_facpub/144Test; https://rdw.rowan.edu/context/som_facpub/article/1142/viewcontent/Carlozzi_McCormack_HDQLIFE.pdfTest |
| DOI: | 10.1007/s11136-016-1386-3 |
| الإتاحة: | https://doi.org/10.1007/s11136-016-1386-3Test https://rdw.rowan.edu/som_facpub/144Test https://rdw.rowan.edu/context/som_facpub/article/1142/viewcontent/Carlozzi_McCormack_HDQLIFE.pdfTest |
| رقم الانضمام: | edsbas.2508AD7D |
| قاعدة البيانات: | BASE |
| DOI: | 10.1007/s11136-016-1386-3 |
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