Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing

Abstract

Purpose Neuro-QOL provides a clinically relevant and psychometrically robust health-related quality of life (HRQL) assessment tool for both adults and children with common neurological disorders. We now report the psychometric results for the adult tools. Methods An extensive research, survey and consensus process was used to produce a list of 5 priority adult neurological conditions (stroke, multiple sclerosis, Parkinson’s disease, epilepsy and ALS). We identified relevant health related quality of life (HRQL) domains through multiple methods and data sources including a comprehensive review of the literature and literature search, expert interviews and surveys and patient and caregiver focus groups. The final domain framework consisted of 17 domains of Physical, Mental and Social health. There were five phases of item development: (1) identification of 3,482 extant items, (2) item classification and selection, (3) item review and revision, (4) cognitive interviews with 63 patients to assess their understanding of individual items and (5) field testing of 432 representative items. Participants and Procedures Participants were drawn from the US general population and clinical settings, and included both English and Spanish speaking subjects (N = 3,246). Confirmatory factor analysis (CFA) was used to evaluate the dimensionality of unidimensional domains. Where the domain structure was previously unknown, the dataset was split and first analyzed with exploratory factor analysis and then CFA. Samejima’s graded response model (GRM) was used to calculate IRT parameters. We further evaluated differential item functioning (DIF) on gender, education and age. Results Thirteen unidimensional calibrated item banks consisting of 297 items were developed. All of the tested item banks had high reliability and few or no locally dependent items. The range of item slopes and thresholds with good information are reported for each of the item banks. The banks can support CAT and the development of short forms. Conclusion The Neuro-QOL measurement system provides item banks and short forms that enable PRO measurement in neurological research, minimizes patient burden and can be used to create multiple instrument types minimizing standard error. The 17 adult measures include 13 calibrated item banks, 3 item pools available for calibration work by others, and 1 stand-alone scale (index). The Neuro-QOL instruments provide a “common metric” of representative concepts for use across patient groups in different studies.

Neuro-QOL

“…8 We then conducted large-scale testing to calibrate item response theory (IRT)-based 13 item banks across physical, mental, and social domains of QOL. 14,15 Each Neuro-QOL bank includes a large collection of items (questions and their response options) that have been evaluated and tested to ensure their relevance, clarity, fit with the concept being measured, and informativeness. 15 This produced 13 adult QOL item banks (anxiety; depression; fatigue; upper extremity function-fine motor, activities of daily living; lower extremity function-mobility; applied cognition-general concerns; applied cognition-executive function; emotional and behavioral dyscontrol; positive affect and well-being; sleep disturbance; ability to participate in social roles and activities; satisfaction with social roles and activities; stigma).…”

“…The clinical panel sample was 53% male with mean age of 56.2 years (SD ϭ 12.8). 15 Finally, a third sample of 581 outpatient neurology patients was drawn from collaborating neurologists around the United States and Puerto Rico, and included patients with physician-diagnosed epilepsy, stroke, ALS, MS, or PD. Comorbidity was not an exclusionary criterion.…”

“…Each short form was constructed using the same approach. Starting with item statistics generated from the IRT item calibrations (response category threshold and slope parameters), 15 we ranked items by the amount of information they provided across the range of what was being measured (e.g., applied cognition). We also ran CAT simulations to identify items selected early in the procedure.…”

Direct-to-Implant Single-Stage Immediate Breast Reconstruction with Acellular Dermal Matrix

“…Stigmarelated questions were adapted from two Neuro-QOL short forms (Ability to Participate in Social Roles and Activities and Stigma) and the Amputee Body-Image Scale (ABIS). [22][23][24][25] These surveys were created and validated to be self-administered by patients to report their personal experiences; we modified select items so that the questions would be in reference to other people. For example, the ABIS question, "Because I am an amputee, I feel anxious about my appearance on a daily basis" was altered to "People with a single finger amputation feel anxious about their appearance on a daily basis.…”

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“…In addition to motor assessments, participants completed several questionnaires to assess non-motor symptoms and daily function before and after the intervention. The measures assessed were the Parkinson's Disease Quality of Life Scale (PDQ-39), as well as several self-report measures from the NIH Neuro-QOL , which were developed and validated to assess health related quality of life across major neurological disorders, including Parkinson's disease [31][32][33]. This included short forms for fatigue, anxiety, depression, executive function, emotional and behavioral dyscontrol, stigma, positive affect and wellbeing, and sleep.…”