HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)
| Autor: | Ira Shoulson, Rebecca E. Ready, Stacey K. Barton, Jane S. Paulsen, Stephen M. Rao, Julie C. Stout, Elizabeth A. Hahn, Stephen G. Schilling, Noelle E. Carlozzi, Michael D. Geschwind, Susan Perlman, Jennifer A. Miner, Martha Nance, Christopher A. Ross, Anna L. Kratz, Kimberly A. Quaid, Jin Shei Lai, Praveen Dayalu, H. Marin, Michael K. McCormack, Siera Goodnight, Nancy R. Downing, Joel S. Perlmutter, Samuel Frank, Richard Gershon, David Cella |
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| Rok vydání: | 2016 |
| Předmět: |
Adult
Male Gerontology medicine.medical_specialty Neuro-QoL Health-related quality of life Disease Article PROMIS 03 medical and health sciences 0302 clinical medicine Quality of life (healthcare) Sickness Impact Profile Surveys and Questionnaires medicine Humans Psychology 030212 general & internal medicine Social determinants of health Psychiatry HDQLIFE Patient-reported outcome Quality of Life Research Health related quality of life Public health Patient-reported outcome (PRO) Public Health Environmental and Occupational Health Cognition Middle Aged Huntington disease humanities Huntington Disease Health Policy & Services Public Health and Health Services Female 030217 neurology & neurosurgery |
| Zdroj: | Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, vol 25, iss 10 Carlozzi, NE; Schilling, SG; Lai, J-S; Paulsen, JS; Hahn, EA; Perlmutter, JS; et al.(2016). HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). QUALITY OF LIFE RESEARCH, 25(10), 2441-2455. doi: 10.1007/s11136-016-1386-3. UC San Francisco: Retrieved from: http://www.escholarship.org/uc/item/2nb8m503 |
| ISSN: | 1573-2649 0962-9343 |
| Popis: | PurposeHuntington 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.MethodsNew 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.ResultsModerate 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.ConclusionsHDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD. |
| Databáze: | OpenAIRE |
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