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Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.

ABSTRACT: BACKGROUND:Social health is an important concern in persons with Huntington's disease (HD); however, there is little literature examining this construct in this population. OBJECTIVE:While cross-sectional data supports the clinical utility of two Neuro-QoL social health measures in persons with HD, data is still needed to establish their longitudinal validity. METHODS:Participants (N?=?358) completed baseline and at least one follow-up (12- and 24-month) assessment that included the completion of Neuro-QoL Social Health computer adaptive tests (CATs) and short forms (for Ability to Participate in Social Roles and Activities [SRA] and Satisfaction with SRA). Test-retest reliability was examined using intra class correlations, and one-way ANOVAs with Bonferroni post-hoc contrasts were used to determine whether there were group differences among premanifest, early- and late-stage HD participants on the Social health measures. In addition, standardized response means were used to examine longitudinal responsiveness, and mixed or general linear models were used to examine change over time (relative to self-reported change on an associated anchor item about social health and clinician-rated change based on Total Functional Capacity scores from the UHDRS). RESULTS:Test-retest reliability of the measures was excellent (ICCs ranged from 0.82 to 0.87 across the different measures) and persons with greater disease burden reported more problems with social health than those at earlier stages in the disease process (all p?

SUBMITTER: Carlozzi NE

PROVIDER: S-EPMC7799504 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.

Carlozzi Noelle E NE Boileau Nicholas R NR Hahn Elizabeth A EA Barton Stacey K SK Cella David D McCormack Michael K MK Ready Rebecca E RE

Journal of Huntington's disease 20200101 1

<h4>Background</h4>Social health is an important concern in persons with Huntington's disease (HD); however, there is little literature examining this construct in this population.<h4>Objective</h4>While cross-sectional data supports the clinical utility of two Neuro-QoL social health measures in persons with HD, data is still needed to establish their longitudinal validity.<h4>Methods</h4>Participants (N = 358) completed baseline and at least one follow-up (12- and 24-month) assessment that inc ...[more]

PMID: 31744014

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Project description:BackgroundThe 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.MethodsAt 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.ResultsTest-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).ConclusionsThe 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.

Project description:BackgroundImpaired balance has a significant negative impact on mobility, functional independence, and fall risk in older adults. Although several, well-respected balance measures are currently in use, there is limited evidence regarding the most appropriate measure to assess change in community-dwelling older adults.ObjectiveThe aim of this study was to compare floor and ceiling effects, sensitivity to change, and responsiveness across the following balance measures in community-dwelling elderly people with functional limitations: Berg Balance Scale (BBS), Performance-Oriented Mobility Assessment total scale (POMA-T), POMA balance subscale (POMA-B), and Dynamic Gait Index (DGI).DesignRetrospective data from a 16-week exercise trial were used. Secondary analyses were conducted on the total sample and by subgroups of baseline functional limitation or baseline balance scores.MethodsParticipants were 111 community-dwelling older adults 65 years of age or older, with functional limitations. Sensitivity to change was assessed using effect size, standardized response mean, and paired t tests. Responsiveness was assessed using minimally important difference (MID) estimates.ResultsNo floor effects were noted. Ceiling effects were observed on all measures, including in people with moderate to severe functional limitations. The POMA-T, POMA-B, and DGI showed significantly larger ceiling effects compared with the BBS. All measures had low sensitivity to change in total sample analyses. Subgroup analyses revealed significantly better sensitivity to change in people with lower compared with higher baseline balance scores. Although both the total sample and lower baseline balance subgroups showed statistically significant improvement from baseline to 16 weeks on all measures, only the lower balance subgroup showed change scores that consistently exceeded corresponding MID estimates.LimitationsThis study was limited to comparing 4 measures of balance, and anchor-based methods for assessing MID could not be reported.ConclusionsImportant limitations, including ceiling effects and relatively low sensitivity to change and responsiveness, were noted across all balance measures, highlighting their limited utility across the full spectrum of the community-dwelling elderly population. New, more challenging measures are needed for better discrimination of balance ability in community-dwelling elderly people at higher functional levels.

Project description:Objectives: It is important for clinicians involved in the care of patients with advanced glenohumeral osteoarthritis to determine clinically significant change when using outcome measures. There is little information on the amount of substantial clinical benefit in shoulder outcomes after shoulder arthroplasty. The purpose of this study was twofold: (1) to quantify substantial clinical benefit for the American Shoulder and Elbow Surgery score, the Constant Murley Score, and the Western Ontario Osteoarthritis of the Shoulder index and (2) to provide estimates of responsiveness and sensitivity to change for these measures following shoulder arthroplasty. Methods: The study involved a secondary analysis of previously collected data. The substantial clinical benefit and responsiveness of the measures were calculated based on external anchors related to change in pain, range of motion, and ability to carry out activities of daily living. The areas under curve and standardized response mean represented responsiveness and sensitivity to change. Results: The data of 159 and 131 patients with complete follow-up at 6?months and 2?years were reviewed. The amount of substantial clinical benefit was dependent on the outcome measure and the external anchor and increased for all measures from 6?months to 2?years. Responsiveness was high (areas under curve?>?0.80) at 6?months and further improved at 2?years (areas under curve?>?0.88). The standardized response mean values of both time points were over 2.00, indicating high effect sizes. The standardized response means of the Constant Murley Score were statistically significantly higher than the standardized response means of the American Shoulder and Elbow Surgery and Western Ontario Osteoarthritis of the Shoulder. Conclusion: Amount of substantial clinical improvement in pain, range of motion, and activities of daily living following shoulder arthroplasty depends on the type of outcome measure used. All three measures, the American Shoulder and Elbow Surgery, absolute and relative Constant Murley Score, and Western Ontario Osteoarthritis of the Shoulder, demonstrated good to excellent accuracy and optimal standardized response means. Level of evidence: Level III, Retrospective Cohort study

Dataset Information

Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.

Publications

Responsiveness to Change Over Time: An Examination of the Neuro-QoL Social Function Measures in Persons with Huntington's Disease.

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