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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 450-458 |
| Number of pages | 9 |
| Journal | Psychological assessment |
| Volume | 30 |
| Issue number | 4 |
| DOIs | |
| State | Published - Apr 1 2018 |
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Keywords
- Community integration
- HDQLIFE
- Health-related quality of life
- Neuro-QoL
- Social participation
ASJC Scopus subject areas
- Clinical Psychology
- Psychiatry and Mental health
Cite this
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Patient-reported outcome measures in Huntington disease : Quality of life in neurological disorders (Neuro-QoL) social functioning measures. / Carlozzi, Noelle E.; Hahn, Elizabeth A; Goodnight, Siera M.; Kratz, Anna L.; Paulsen, Jane S.; Stout, Julie C.; Frank, Samuel; Miner, Jennifer A.; Cella, David; Gershon, Richard; Schilling, Stephen G.; Ready, Rebecca E.
In: Psychological assessment, Vol. 30, No. 4, 01.04.2018, p. 450-458.Research output: Contribution to journal › Article
TY - JOUR
T1 - Patient-reported outcome measures in Huntington disease
T2 - Quality of life in neurological disorders (Neuro-QoL) social functioning measures
AU - Carlozzi, Noelle E.
AU - Hahn, Elizabeth A
AU - Goodnight, Siera M.
AU - Kratz, Anna L.
AU - Paulsen, Jane S.
AU - Stout, Julie C.
AU - Frank, Samuel
AU - Miner, Jennifer A.
AU - Cella, David
AU - Gershon, Richard
AU - Schilling, Stephen G.
AU - Ready, Rebecca E.
PY - 2018/4/1
Y1 - 2018/4/1
N2 - 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.
AB - 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.
KW - Community integration
KW - HDQLIFE
KW - Health-related quality of life
KW - Neuro-QoL
KW - Social participation
UR - http://www.scopus.com/inward/record.url?scp=85045706938&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85045706938&partnerID=8YFLogxK
U2 - 10.1037/pas0000479
DO - 10.1037/pas0000479
M3 - Article
VL - 30
SP - 450
EP - 458
JO - Psychological Assessment
JF - Psychological Assessment
SN - 1040-3590
IS - 4
ER -