HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

Carlozzi, Noelle E.; Schilling, Steve P.; Lai, Jin‐Shei; Paulsen, Jane S.; Hahn, Elizabeth A.; Perlmutter, Joel S.; Ross, Christopher A.; Downing, Nancy R.; Kratz, Anna L.; McCormack, Michael K.; Nance, Martha; Quaid, Kimberly A.; Stout, Julie C.; Gershon, Richard; Ready, Rebecca E.; Miner, Jennifer A.; Barton, Stacey K.; Perlman, Susan; Rao, Stephen M.; Frank, Samuel; Shoulson, Ira; Marín, Humberto; Geschwind, Michael D.; Dayalu, Praveen; Goodnight, Siera; Cella, David

doi:10.1007/s11136-016-1386-3

Cited by 43 publications

(85 citation statements)

References 67 publications

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“…Data for the validation of the HD-PRO-TRIAD™ were analyzed retrospectively from a longitudinal study that examines HRQOL at baseline, 12- and 24-months [16]; a detailed description of the broader study protocol is reported elsewhere [16]. Recruitment for this study also took place in collaboration with the PREDICT-HD study, a global cohort study with the purpose of assessing early symptoms of HD in prodromal individuals; ~36% (n = 173) of participants were recruited in conjunction with the PREDICT-HD study [29].…”

Section: Methodsmentioning

confidence: 99%

“…In addition to completing several core assessments as a part of their PREDICT-HD study visit, these individuals also agreed to complete additional self-report measures that were specific to this study protocol. The remaining 64% (N = 309) of participants were recruited through other recruitment sources [16]. All data were collected in accordance with and approval of the local institutional review boards.…”

Section: Methodsmentioning

confidence: 99%

“…Specifically, previous work highlights the utilization of the World Health Organization framework for HRQOL, in conjunction with a panel of HD experts (i.e., practitioners and nurses) and patients to identify the physical, emotional, and cognitive aspects of HRQOL that are most relevant to individuals with HD, as well as the most common core triad symptoms of HD [15]. Although a handful of measures have been developed to examine HRQOL specific to HD [16–21], psychometric properties to support their clinical utility is mixed (or not yet available). In some cases these measures are not designed to examine the full triad of symptoms in HD, or do not assess symptoms that are most important to HD patients (i.e., chorea, speech, swallowing) [15].…”

Section: Introductionmentioning

confidence: 99%

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Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington’s Disease

Boileau

Stout

Paulsen

et al. 2017

JHD

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Background: Huntington’s disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIAD™ is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable. Objectives: The current study evaluates the reliability and validity of the HD-PRO-TRIAD™ in a well-characterized sample of individuals with HD. Methods: Four-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n = 97 late) completed the HD-PRO-TRIAD™ questionnaire. Clinician-rated assessments from the Unified Huntington Disease Rating Scales, the short Problem Behaviors Assessment, and three generic measures of HRQOL (WHODAS 2.0, RAND-12, and EQ-5D) were also examined. Results: Internal reliability for all domains and the total HD-PRO-TRIAD™ was excellent (all Cronbach’s α > 0.93). Convergent and discriminant validity were supported by significant associations between the HD-PRO-TRIAD™ domains, and other patient reported outcome measures as well as clinician-rated measures. Known groups validity was supported as the HD-PRO-TRIAD™ differentiated between stages of the disease. Floor and ceiling effects were generally within acceptable limits. There were small effect sizes for 12-month change over time and moderate effect sizes for 24-month change over time. Conclusions: Findings support excellent internal reliability, convergent and discriminant validity, known groups validity, and responsiveness to change over time. The current study supports the clinical efficacy of the HD-PRO-TRIAD™. Future research is needed to assess the test-retest reliability of this measure.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington’s Disease

Boileau

Stout

Paulsen

et al. 2017

JHD

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“…An iterative process comprised of expert review, translatability review, literacy review, and cognitive interviews with individuals with HD, resulted in a final item pool of n = 47 items. See Carlozzi et al [20], for a detailed description of the development of these items and this iterative process.…”

Section: Methodsmentioning

confidence: 99%

“…To fill this urgent need, we aimed to develop a battery of quality of life measures, specifically focused on Huntington disease, the Huntington Disease Health-Related Quality of Life (HDQLIFE) measurement system [20]. HDQLIFE is designed to capture HRQOL across several domains including speech and swallowing dysfunction.…”

mentioning

confidence: 99%

HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties

et al. 2016

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Purpose Huntington disease (HD) is an autosomal dominant neurodegenerative disease which results in several progressive symptoms, including bulbar dysfunction (i.e., speech and swallowing difficulties). Although difficulties in speech and swallowing in HD have a negative impact on health-related quality of life, no patient-reported outcome measure exists to capture these difficulties that are specific to HD. Thus, we developed a new patient reported outcome measure for use in the Huntington Disease Health-Related Quality of Life (HDQLIFE) Measurement System that focused on the impact that difficulties with speech and swallowing have on HRQOL in HD. Methods Five hundred seven individuals with prodromal and/or manifest HD completed 47 newly developed items examining speech and swallowing difficulties. Unidimensional item pools were identified using exploratory and confirmatory factor analyses (EFA and CFA, respectively). Item response theory (IRT) was used to calibrate the final measures. Results EFA and CFA identified two separate unidimensional sets of items: Speech Difficulties (27 items) and Swallowing Difficulties (16 items). Items were calibrated separately for these two measures and resulted in item banks that can be administered as computer adaptive tests (CATs) and/or 6-item, static short forms. Reliability of both of these measures was supported through high correlations between the simulated CAT scores and the full item bank. Conclusions CATs and 6-item calibrated short forms were developed for HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties. These measures both demonstrate excellent psychometric properties, and may have clinical utility in other populations where speech and swallowing difficulties are prevalent.

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Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

Sokol

Troost

Kluger

et al. 2021

Ann Clin Transl Neurol

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Objective Previous work in Huntington’s disease (HD) has shown that a sense of meaning and purpose (M&P) is positively associated with positive affect and well‐being (PAW); however, it was unknown whether HD‐validated patient‐reported outcomes (PROs) influence this association and how M&P impacts PROs in the future. Our study was designed to examine if HD‐validated PROs moderate the relationship between M&P and PAW and to evaluate if baseline M&P predicts 12‐ and 24‐month changes in HD‐validated PROs. Methods This was a longitudinal, multicenter study to develop several PROs (e.g., specific for the physical, emotional, cognitive, and social domains) for people with HD (HDQLIFE). The sample consisted of 322 people with HD (n = 50 prodromal, n = 171 early‐stage manifest, and n = 101 late‐stage manifest HD). A single, multivariate linear mixed‐effects model was performed with PAW as the outcome predicted by main effects for M&P and several moderators (i.e., an HD‐validated PRO) and interactions between M&P and a given PRO. Linear‐mixed models were also used to assess if baseline M&P predicted HD‐validated PROs at 12 and 24 months. Results Higher M&P was positively associated with higher PAW regardless of the magnitude of symptom burden, as represented by HD‐validated PROs, and independent of disease stage. In our primary analysis, baseline M&P predicted increased PAW and decreased depression, anxiety, anger, emotional/behavioral disruptions, and cognitive decline at 12 and 24 months across all disease stages. Interpretation These findings parallel those seen in the oncology population and have implications for adapting and developing psychotherapeutic and palliative HD interventions.

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HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

Cited by 43 publications

References 67 publications

Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington’s Disease

Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington’s Disease

HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties

Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life

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