Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)

Background The majority of persons with Huntington disease (HD) experience mental health symptoms. Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to sel...

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Veröffentlicht in:Quality of life research 2020-12, Vol.29 (12), p.3419-3439
Hauptverfasser: Carlozzi, Noelle E., Boileau, Nicholas R., Roché, Matthew W., Ready, Rebecca E., Perlmutter, Joel S., Chou, Kelvin L., Barton, Stacey K., McCormack, Michael K., Stout, Julie C., Cella, David, Miner, Jennifer A., Paulsen, Jane S.
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container_end_page 3439
container_issue 12
container_start_page 3419
container_title Quality of life research
container_volume 29
creator Carlozzi, Noelle E.
Boileau, Nicholas R.
Roché, Matthew W.
Ready, Rebecca E.
Perlmutter, Joel S.
Chou, Kelvin L.
Barton, Stacey K.
McCormack, Michael K.
Stout, Julie C.
Cella, David
Miner, Jennifer A.
Paulsen, Jane S.
description Background The majority of persons with Huntington disease (HD) experience mental health symptoms. Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period. Methods At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed. Results Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change). Conclusions The Neuro-QoL and PROMIS mental health PROs demonstrated strong psychometric reliability, as well as responsiveness to self-reported and clinician-rated change over time in people with HD.
doi_str_mv 10.1007/s11136-020-02596-1
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Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period. Methods At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed. Results Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change). Conclusions The Neuro-QoL and PROMIS mental health PROs demonstrated strong psychometric reliability, as well as responsiveness to self-reported and clinician-rated change over time in people with HD.</description><identifier>ISSN: 0962-9343</identifier><identifier>EISSN: 1573-2649</identifier><identifier>DOI: 10.1007/s11136-020-02596-1</identifier><identifier>PMID: 32813263</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>Adult ; Female ; Humans ; Huntington Disease - psychology ; Huntingtons disease ; Male ; Medicine ; Medicine &amp; Public Health ; Mental health ; Mental Health - standards ; Middle Aged ; Patient Reported Outcome Measures ; Public Health ; Quality of Life - psychology ; Quality of Life Research ; Reproducibility of Results ; Self report ; Sociology ; Well being</subject><ispartof>Quality of life research, 2020-12, Vol.29 (12), p.3419-3439</ispartof><rights>Springer Nature Switzerland AG 2020</rights><rights>Springer Nature Switzerland AG 2020.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c474t-7e02f4a2851e0b7a5f2e7e1e1611d73279c96faca2b194b4551b1e0fa97d1fd93</citedby><cites>FETCH-LOGICAL-c474t-7e02f4a2851e0b7a5f2e7e1e1611d73279c96faca2b194b4551b1e0fa97d1fd93</cites><orcidid>0000-0003-0439-9429</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://link.springer.com/content/pdf/10.1007/s11136-020-02596-1$$EPDF$$P50$$Gspringer$$H</linktopdf><linktohtml>$$Uhttps://link.springer.com/10.1007/s11136-020-02596-1$$EHTML$$P50$$Gspringer$$H</linktohtml><link.rule.ids>230,314,776,780,881,27901,27902,41464,42533,51294</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32813263$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Carlozzi, Noelle E.</creatorcontrib><creatorcontrib>Boileau, Nicholas R.</creatorcontrib><creatorcontrib>Roché, Matthew W.</creatorcontrib><creatorcontrib>Ready, Rebecca E.</creatorcontrib><creatorcontrib>Perlmutter, Joel S.</creatorcontrib><creatorcontrib>Chou, Kelvin L.</creatorcontrib><creatorcontrib>Barton, Stacey K.</creatorcontrib><creatorcontrib>McCormack, Michael K.</creatorcontrib><creatorcontrib>Stout, Julie C.</creatorcontrib><creatorcontrib>Cella, David</creatorcontrib><creatorcontrib>Miner, Jennifer A.</creatorcontrib><creatorcontrib>Paulsen, Jane S.</creatorcontrib><title>Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)</title><title>Quality of life research</title><addtitle>Qual Life Res</addtitle><addtitle>Qual Life Res</addtitle><description>Background The majority of persons with Huntington disease (HD) experience mental health symptoms. Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period. Methods At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed. Results Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change). 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Boileau, Nicholas R. ; Roché, Matthew W. ; Ready, Rebecca E. ; Perlmutter, Joel S. ; Chou, Kelvin L. ; Barton, Stacey K. ; McCormack, Michael K. ; Stout, Julie C. ; Cella, David ; Miner, Jennifer A. ; Paulsen, Jane S.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c474t-7e02f4a2851e0b7a5f2e7e1e1611d73279c96faca2b194b4551b1e0fa97d1fd93</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adult</topic><topic>Female</topic><topic>Humans</topic><topic>Huntington Disease - psychology</topic><topic>Huntingtons disease</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine &amp; Public Health</topic><topic>Mental health</topic><topic>Mental Health - standards</topic><topic>Middle Aged</topic><topic>Patient Reported Outcome Measures</topic><topic>Public Health</topic><topic>Quality of Life - psychology</topic><topic>Quality of Life Research</topic><topic>Reproducibility of Results</topic><topic>Self report</topic><topic>Sociology</topic><topic>Well being</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Carlozzi, Noelle E.</creatorcontrib><creatorcontrib>Boileau, Nicholas R.</creatorcontrib><creatorcontrib>Roché, Matthew W.</creatorcontrib><creatorcontrib>Ready, Rebecca E.</creatorcontrib><creatorcontrib>Perlmutter, Joel S.</creatorcontrib><creatorcontrib>Chou, Kelvin L.</creatorcontrib><creatorcontrib>Barton, Stacey K.</creatorcontrib><creatorcontrib>McCormack, Michael K.</creatorcontrib><creatorcontrib>Stout, Julie C.</creatorcontrib><creatorcontrib>Cella, David</creatorcontrib><creatorcontrib>Miner, Jennifer A.</creatorcontrib><creatorcontrib>Paulsen, Jane S.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing &amp; 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Patient-reported outcome (PRO) measures are capable of capturing unobservable behaviors and feelings relating to mental health. The current study aimed to test the reliability and responsiveness to self-reported and clinician-rated change over time of Neuro-QoL and PROMIS mental health PROs over the course of a 24-month period. Methods At baseline, 12-months, and 24-months, 362 participants with premanifest or manifest HD completed the Neuro-QoL Depression computer adaptive test (CAT), PROMIS Depression short form (SF), Neuro-QoL Anxiety CAT, PROMIS Anxiety SF, PROMIS Anger CAT and SF, Neuro-QoL Emotional/Behavioral Dyscontrol CAT and SF, Neuro-QoL Positive Affect and Well-Being CAT and SF, and Neuro-QoL Stigma CAT and SF. Participants completed several clinician-administered measures at each time point, as well as several global ratings of change at 12- and 24-months. Reliability (test-retest reliability and measurement error) and responsiveness (using standardized response means and general linear models) were assessed. Results Test-retest reliability and measurement error were excellent for all PROs (all ICC ≥ .90 for test-retest reliability and all SEM percentages ≤ 6.82%). In addition, 12- and 24-month responsiveness were generally supported for the Neuro-QoL and PROMIS mental health PROs; findings relative to clinician-rated anchors of change (e.g., SRMs for the group with declines ranged from .38 to .91 for 24-month change and .09 to .45, with the majority above .25 for 12-month change) were generally more robust than those relative to self-reported anchors of change (e.g., SRMs for the group with declines ranged from .02 to .75, with the majority above .39 for 24-month change and .09 to .45, with the majority above .16 for 12-month change). Conclusions The Neuro-QoL and PROMIS mental health PROs demonstrated strong psychometric reliability, as well as responsiveness to self-reported and clinician-rated change over time in people with HD.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>32813263</pmid><doi>10.1007/s11136-020-02596-1</doi><tpages>21</tpages><orcidid>https://orcid.org/0000-0003-0439-9429</orcidid><oa>free_for_read</oa></addata></record>
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source Jstor Complete Legacy; MEDLINE; Springer Nature - Complete Springer Journals
subjects Adult
Female
Humans
Huntington Disease - psychology
Huntingtons disease
Male
Medicine
Medicine & Public Health
Mental health
Mental Health - standards
Middle Aged
Patient Reported Outcome Measures
Public Health
Quality of Life - psychology
Quality of Life Research
Reproducibility of Results
Self report
Sociology
Well being
title Responsiveness to change over time and test-retest reliability of the PROMIS and Neuro-QoL mental health measures in persons with Huntington disease (HD)
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