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Objectives: To develop a measure of natural environment and human-made change features (Chapter 2 of the international classification of functioning, disability, and health) and evaluate the influence of perceived barriers on health-related quality of life.Methods: A sample of 570 adults with stroke, spinal cord injury, and traumatic brain injury residing in community settings reported their functioning in home, outdoor, and community settings (mean age = 47.0 years, SD = 16.1). They rated 18 items with a 5-point rating scale to describe the influence of barriers to moving around, seeing objects, hearing sounds, hearing conversations, feeling safe, and regulating temperature and indicated whether any difficulties were due to environmental features. We used Rasch analysis to identify misfitting items and evaluate differential item functioning (DIF) across impairment groups. We computed correlations between barriers and patient-reported outcomes measurement information system (PROMIS) social domain measures and community participation indicators (CPI) measures.Results: The 18 items demonstrated person reliability of .70, discriminating nearly three levels of barriers. All items fit the Rasch model; impairment-related DIF was negligible. Ceiling effects were negligible, but 25 % of the respondents were at the floor, indicating that they did not experience barriers that they attributed to the built and natural environment. As anticipated, barriers correlated moderately with PROMIS and CPI variables, suggesting that although this new item bank measures a construct that is related to participation and health-related quality of life, it also captures something unique. Known-groups validity was supported by wheelchair users reporting a higher level of barriers than did ambulatory respondents.Conclusions: Preliminary evidence supports the reliability and validity of this new measure of barriers to the built and natural environment. This measure allows investigators and clinicians to measure perceptions of the natural environment and human-made changes, providing information that can guide interventions to reduce barriers. Moderate relationships between barriers and PROMIS and CPI variables provide support for the measurement and theory of environmental influences on social health and participation. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives To develop functional ability levels for the Spinal Cord Injury Functional Index (SCI-FI) and to validate them using calibration and reliability samples. Design Three-phase strategy involved (1) performing quantitative synthesis of SCI-FI data to create item maps; (2) using a panel of experts to identify functional ability levels after the bookmarking and Delphi consensus-building process; and (3) performing quantitative analyses to examine demographic characteristics across 2 samples, assessing the distribution pattern across functional ability levels, and examining concurrent validity using the self-reported functional measure and the observer-rated FIM. Setting Inpatient and community settings. Participants People 18 years or older with traumatic spinal cord injury (N=1124) were recruited from the Spinal Cord Injury Model Systems programs and stratified by diagnosis, severity, and time since injury (n=855 and n=269 for calibration and reliability samples, respectively). Interventions Not applicable. Main Outcome Measure SCI-FI. Results Five functional ability levels were identified for all SCI-FI domains, except fine motor having 4 functional ability levels. Statistical test results indicated no significant differences in the distribution pattern across the 2 samples across functional ability levels for all domains except for ambulation. Known-group comparisons were able to discern the spinal cord injury population as expected. Basic mobility, self-care, and wheelchair mobility domains had a cluster of persons with paraplegia and incomplete lesions at higher functional ability levels and persons with tetraplegia and complete lesions at lower functional ability levels. For the ambulation domain, the distribution was skewed to the lower end, with a relatively small percentage of persons with incomplete lesions (paraplegia and tetraplegia) at higher functional ability levels. For the fine motor domain, the distribution was skewed to higher functional ability levels, with a high percentage of persons with paraplegia at the highest level (complete and incomplete lesions). Concurrent validity analyses revealed SCI-FI functional levels to be significantly ( P <.001) positively correlated with both the self-reported functional measure and the observer-rated FIM. Conclusions Clinicians can use functional ability levels to discuss patients' functional capabilities with them and their family. [ABSTRACT FROM AUTHOR]

Objective To develop and evaluate the psychometric properties of an item set measuring economic quality of life (QOL) for use by individuals with disabilities. Design Survey. Setting Community settings. Participants Individuals with disabilities completed individual interviews (n=64), participated in focus groups (n=172), and completed cognitive interviews (n=15). Inclusion criteria included the following: traumatic brain injury, spinal cord injury, or stroke; age ≥18 years; and ability to read and speak English. We calibrated the items with 305 former rehabilitation inpatients. Interventions None. Main Outcome Measure Economic QOL. Results Confirmatory factor analysis showed acceptable fit indices (comparative fit index=.939, root mean square error of approximation=.089) for the 37 items. However, 3 items demonstrated local item dependence. Dropping 9 items improved fit and obviated local dependence. Rasch analysis of the remaining 28 items yielded a person reliability of .92, suggesting that these items discriminate about 4 economic QOL levels. Conclusions We developed a 28-item bank that measures economic aspects of QOL. Preliminary confirmatory factor analysis and Rasch analysis results support the psychometric properties of this new measure. It fills a gap in health-related QOL measurement by describing the economic barriers and facilitators of community participation. Future development will make the item bank available as a computer adaptive test. [ABSTRACT FROM AUTHOR]

Objectives To identify aspects of health-related quality of life (HRQOL) that are relevant to caregivers of individuals with traumatic brain injury (TBI) and to propose an integrated conceptual framework based on this information. Design Nine focus groups with caregivers of individuals with moderate-to-severe TBI were qualitatively analyzed to ascertain the effect that caring for an individual with a TBI has on caregiver HRQOL. Setting University hospitals and rehabilitation treatment centers. Participants Caregivers (N=55) of individuals with moderate-to-severe TBI. Interventions Not applicable. Main Outcome Measures Not applicable. Results Qualitative analysis indicated that caregivers were most concerned about their social health (42% of comments). Other important issues were emotional health (34%), physical health (11%), cognitive health (3%), and feelings of loss (9%; feelings of loss related to changes in the future/potential of the care recipient or related to the caregiver). Areas of concern that were discussed that were specific to the caregiver and not fully evaluated by existing patient-reported outcomes (PROs) included feelings of loss, anxiety related to the caregiver role (reinjury concerns, worry about leaving the person alone, etc), and caregiver strain (burden, stress, feeling overwhelmed, etc). Conclusions Although existing PROs capture relevant aspects of HRQOL for caregivers, there are HRQOL domains that are not addressed. A validated and sensitive HRQOL tool for caregivers of individuals with TBI will facilitate initiatives to improve outcomes in this underserved group. [ABSTRACT FROM AUTHOR]