Journal article
Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures
Psychological assessment, Vol.30(4), pp.450-458
04/2018
DOI: 10.1037/pas0000479
PMCID: PMC5708162
PMID: 28557480
Abstract
Social functioning is an essential but poorly understood component of health-related quality of life (HRQOL) for people with Huntington disease (HD). We report on the psychometric properties of 2 Neuro-QoL patient-reported outcome measures to assess social functioning in HD. Persons with prodromal (n = 198) or manifest HD (n = 195 early and n = 117 late) completed Neuro-QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities. Items from 2 generic HRQOL patient-reported outcome measures were used to create a social functioning composite score; items from the Unified Huntington's Disease Rating Scale and Problem Behaviors Assessment Scale were used to create a clinician-rated composite score of social function. Internal consistencies for the scores on the Neuro-QoL measures were excellent (> .88). Computer adaptive test administration had some advantages over computer-administered static Short Forms. Validity was supported by significant associations between the scores on the Neuro-QoL measures and other self- and clinician-reports of social function. Individuals with prodromal HD had better social functioning than the manifest HD groups; individuals with late-HD had less satisfaction and ability to participate in social roles and activities than the other 2 groups. Neuro-QoL provides brief, reliable scores of social functioning that measure ability to participate in, and satisfaction with, social roles and activities in persons with prodromal and manifest HD. In addition, test score interpretations of these measures support their validity in people with prodromal and manifest HD. These measurement tools add breadth to treatment outcome measures in HD and can increase understanding of the social implications of living with HD. (PsycINFO Database Record
Details
- Title: Subtitle
- Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures
- Creators
- Noelle E Carlozzi - Department of Physical Medicine & Rehabilitation.Elizabeth A Hahn - Northwestern UniversitySiera M Goodnight - University of Michigan–Ann ArborAnna L Kratz - University of Michigan–Ann ArborJane S Paulsen - University of IowaJulie C Stout - Monash UniversitySamuel Frank - Beth Israel Deaconess Medical CenterJennifer A Miner - University of Michigan–Ann ArborDavid Cella - Northwestern UniversityRichard C Gershon - Northwestern UniversityStephen G Schilling - University of Michigan–Ann ArborRebecca E Ready - Department of Psychological and Brain Sciences, University of Massachusetts.
- Resource Type
- Journal article
- Publication Details
- Psychological assessment, Vol.30(4), pp.450-458
- DOI
- 10.1037/pas0000479
- PMID
- 28557480
- PMCID
- PMC5708162
- ISSN
- 1040-3590
- eISSN
- 1939-134X
- Grant note
- R01 NS040068 / NINDS NIH HHS R01 NS103475 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS HHSN268201200008I / NHLBI NIH HHS UL1 TR000433 / NCATS NIH HHS
- Language
- English
- Date published
- 04/2018
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383275902771
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