Dataset Information

TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury.

ABSTRACT:

Objective

To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative.

Setting

Five TBI Model Systems centers across the United States.

Participants

Adults with TBI.

Design

Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods.

Main outcomes measures

Twenty-two TBI-QOL item banks/scales.

Results

The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life.

Conclusions

The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings.

SUBMITTER: Tulsky DS

PROVIDER: S-EPMC4697960 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:The Patient-Reported Outcomes Measurement Information System (PROMIS) Smoking Initiative has developed item banks for assessing six smoking behaviors and biopsychosocial correlates of smoking among adult cigarette smokers. The goal of this study is to evaluate the performance of the Spanish version of the PROMIS smoking item banks as compared to the original banks developed in English.The six PROMIS banks for daily smokers were translated into Spanish and administered to a sample of Spanish-speaking adult daily smokers in the United States (N = 302). We first evaluated the unidimensionality of each bank using confirmatory factor analysis. We then conducted a two-group item response theory calibration, including an item response theory-based Differential Item Functioning (DIF) analysis by language of administration (Spanish vs. English). Finally, we generated full bank and short form scores for the translated banks and evaluated their psychometric performance.Unidimensionality of the Spanish smoking item banks was supported by confirmatory factor analysis results. Out of a total of 109 items that were evaluated for language DIF, seven items in three of the six banks were identified as having levels of DIF that exceeded an established criterion. The psychometric performance of the Spanish daily smoker banks is largely comparable to that of the English versions.The Spanish PROMIS smoking item banks are highly similar, but not entirely equivalent, to the original English versions. The parameters from these two-group calibrations can be used to generate comparable bank scores across the two language versions.In this study, we developed a Spanish version of the PROMIS smoking toolkit, which was originally designed and developed for English speakers. With the growing Spanish-speaking population, it is important to make the toolkit more accessible by translating the items and calibrating the Spanish version to be comparable with English-language scores. This study provided the translated item banks and short forms, comparable unbiased scores for Spanish speakers and evaluations of the psychometric properties of the new Spanish toolkit.

Project description: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.

Project description:OBJECTIVES:To develop separate item banks for three health domains of health-related quality of life (HRQOL) ranked as important by Singaporeans - physical functioning, social relationships, and positive mindset. METHODS:We adapted the Patient Reported Outcomes Measurement Information System Qualitative Item Review protocol, with input and endorsement from laymen and experts from various relevant fields. Items were generated from 3 sources: 1) thematic analysis of focus groups and in-depth interviews for framework (n = 134 participants) and item(n = 52 participants) development, 2) instruments identified from a literature search (PubMed) of studies that developed or validated a HRQOL instrument among adults in Singapore, 3) a priori identified instruments of particular relevance. Items from these three sources were "binned" and "winnowed" by two independent reviewers, blinded to the source of the items, who harmonized their selections to generate a list of candidate items (each item representing a subdomain). Panels with lay and expert representation, convened separately for each domain, reviewed the face and content validity of these candidate items and provided inputs for item revision. The revised items were further refined in cognitive interviews. RESULTS:Items from our qualitative studies (51 physical functioning, 44 social relationships, and 38 positive mindset), the literature review (36 instruments from 161 citations), and three a priori identified instruments, underwent binning, winnowing, expert panel review, and cognitive interview. This resulted in 160 candidate items (61 physical functioning, 51 social relationships, and 48 positive mindset). CONCLUSIONS:We developed item banks for three important health domains in Singapore using inputs from potential end-users and the published literature. The next steps are to calibrate the item banks, develop computerized adaptive tests (CATs) using the calibrated items, and evaluate the validity of test scores when these item banks are administered adaptively.