Patient-reported outcome measures in Huntington disease

Quality of life in neurological disorders (Neuro-QoL) social functioning measures

Noelle E. Carlozzi*, Elizabeth A Hahn, Siera M. Goodnight, Anna L. Kratz, Jane S. Paulsen, Julie C. Stout, Samuel Frank, Jennifer A. Miner, David Cella, Richard Gershon, Stephen G. Schilling, Rebecca E. Ready

*Corresponding author for this work

Research output: Contribution to journalArticle

2 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)450-458
Number of pages9
JournalPsychological assessment
Volume30
Issue number4
DOIs
StatePublished - Apr 1 2018

Fingerprint

Huntington Disease
Nervous System Diseases
Quality of Life
Aptitude
Patient Reported Outcome Measures
Psychometrics
Self Report
Outcome Assessment (Health Care)

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

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. / Patient-reported outcome measures in Huntington disease : Quality of life in neurological disorders (Neuro-QoL) social functioning measures. In: Psychological assessment. 2018 ; Vol. 30, No. 4. pp. 450-458.
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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.",
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Carlozzi, NE, Hahn, EA, Goodnight, SM, Kratz, AL, Paulsen, JS, Stout, JC, Frank, S, Miner, JA, Cella, D, Gershon, R, Schilling, SG & Ready, RE 2018, 'Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures', Psychological assessment, vol. 30, no. 4, pp. 450-458. https://doi.org/10.1037/pas0000479

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 journalArticle

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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

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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.

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