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Psychol Assess. 2018 Apr;30(4):450-458. doi: 10.1037/pas0000479. Epub 2017 May 29.

Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures.

Author information

Department of Physical Medicine & Rehabilitation.
Department of Medical Social Sciences and Department of Preventive Medicine, Northwestern University.
Department of Physical Medicine and Rehabilitation, University of Michigan.
Department of Psychiatry, The University of Iowa.
Institute of Cognitive and Clinical Neurosciences, School of Psychological Sciences, Monash University.
Beth Israel Deaconess Medical Center.
Department of Medical Social Sciences, Northwestern University.
Department of Medical Social Sciences, Department of Preventive Medicine, Northwestern University.
Institute for Social Research, University of Michigan.
Department of Psychological and Brain Sciences, University of Massachusetts.


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.

[Available on 2019-04-01]

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