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Article details
Title
Patient-Reported Outcome Measures in Huntington Disease: Quality of Life in Neurological Disorders (Neuro-QoL) Social Functioning Measures
Published in
Psychological Assessment, April 2018
DOI 10.1037/pas0000479
Pubmed ID
Authors
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

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Mendeley demographics

Mendeley demographics

The data shown below were compiled from readership statistics for 82 Mendeley readers of this research output. Click here to see the associated Mendeley record.
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Geographical breakdown

Geographical breakdown
Country Count As %
Unknown 82 100%

Demographic breakdown

Readers by professional status
Readers by professional status Count As %
Student > Ph. D. Student 9 11%
Student > Master 8 10%
Student > Doctoral Student 6 7%
Other 4 5%
Researcher 4 5%
Other 7 9%
Unknown 44 54%
Readers by discipline
Readers by discipline Count As %
Psychology 14 17%
Nursing and Health Professions 7 9%
Medicine and Dentistry 7 9%
Social Sciences 5 6%
Agricultural and Biological Sciences 2 2%
Other 3 4%
Unknown 44 54%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 1. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 31 May 2017.
All research outputs
#20,660,571
of 25,382,440 outputs
Outputs from Psychological Assessment
#1,592
of 1,776 outputs
Outputs of similar age
#268,557
of 343,807 outputs
Outputs of similar age from Psychological Assessment
#11
of 15 outputs
Altmetric has tracked 25,382,440 research outputs across all sources so far. This one is in the 10th percentile – i.e., 10% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,776 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.3. This one is in the 4th percentile – i.e., 4% of its peers scored the same or lower than it.
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