Health and Disability Research Institute Papers
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Item Rehabilitation Medicine Summit: Building Research Capacity Executive Summary(BioMed Central, 2006-1-3) Frontera, Walter R.; Fuhrer, Marcus J.; Jette, Alan M.; Chan, Leighton; Cooper, Rory A.; Duncan, Pamela W.; Kemp, John D.; Ottenbacher, Kenneth J.; Peckham, P. Hunter; Roth, Elliot J.; Tate, Denise G.The general objective of the "Rehabilitation Medicine Summit: Building Research Capacity" was to advance and promote research in medical rehabilitation by making recommendations to expand research capacity. The five elements of research capacity that guided the discussions were: 1) researchers; 2) research culture, environment, and infrastructure; 3) funding; 4) partnerships; and 5) metrics. The 100 participants included representatives of professional organizations, consumer groups, academic departments, researchers, governmental funding agencies, and the private sector. The small group discussions and plenary sessions generated an array of problems, possible solutions, and recommended actions. A post-Summit, multi-organizational initiative is called to pursue the agendas outlined in this report (see Additional File 1).Item Development of Items Designed to Evaluate Activity Performance and Participation in Children and Adolescents with Spinal Cord Injury(Hindawi Publishing Corporation, 2009-10-25) Calhoun, Christina L.; Haley, Stephen M.; Riley, Anne; Vogel, Lawrence C.; McDonald, Craig M.; Mulcahey, M. J.Background/Objective. Outcomes-based data, whether used clinically or for research, are difficult to collect in the pediatric spinal cord injury (SCI) population due to a lack of appropriate assessment measures. The purpose of this paper is twofold: to describe the process by which two item pools were developed to evaluate activity performance and participation among children with SCI and to introduce the resultant items specific to pediatric SCI. Methods. The process of item development, including construct development, review of related assessment tools, chart review, item writing and refinement using focus groups, cognitive interviews, and further refinement, was used to create the items pools for activity and participation for children and adolescents with SCI. Results. A total of 347 items were written for the activity performance construct and 61 items were written for the participation construct. Several domains were established within each construct and items were written for both child and parent respondents. Conclusion. The process of detailed item development is the first step in the process of developing an outcomes instrument for children and adolescents with SCI to assess activity performance and participation. The items are representative of pediatric SCI because they address areas specific to children and adolescents with SCI such as wheeled mobility, upper extremity function with adaptive equipment, role performance, and socialization. After testing these items in calibration studies, we will determine if these items can be developed into effective computer-adaptive testing applications.Item Does a Functional Activity Programme Improve Function, Quality of Life, and Falls for Residents in Long Term Care? Cluster Randomised Controlled Trial(BMJ Publishing Group Ltd., 2008-10-09) Kerse, Ngaire; Peri, Kathy; Robinson, Elizabeth; Wilkinson, Tim; von Randow, Martin; Kiata, Liz; Parsons, John; Latham, Nancy; Parsons, Matthew; Willingale, Jane; Brown, Paul; Arroll, BruceObjective To assess the effectiveness of an activity programme in improving function, quality of life, and falls in older people in residential care. Design Cluster randomised controlled trial with one year follow-up. Setting 41 low level dependency residential care homes in New Zealand. Participants 682 people aged 65 years or over. Interventions 330 residents were offered a goal setting and individualised activities of daily living activity programme by a gerontology nurse, reinforced by usual healthcare assistants; 352 residents received social visits. Main outcome measures Function (late life function and disability instruments, elderly mobility scale, FICSIT-4 balance test, timed up and go test), quality of life (life satisfaction index, EuroQol), and falls (time to fall over 12 months). Secondary outcomes were depressive symptoms and hospital admissions. Results 473 (70%) participants completed the trial. The programme had no impact overall. However, in contrast to residents with impaired cognition (no differences between intervention and control group), those with normal cognition in the intervention group may have maintained overall function (late life function and disability instrument total function, P=0.024) and lower limb function (late life function and disability instrument basic lower extremity, P=0.015). In residents with cognitive impairment, the likelihood of depression increased in the intervention group. No other outcomes differed between groups. Conclusion A programme of functional rehabilitation had minimal impact for elderly people in residential care with normal cognition but was not beneficial for those with poor cognition. Trial registration Australian Clinical Trials Register ACTRN12605000667617.Item Peer Knowledge and Roles in Supporting Access to Care and Treatment(Springer US, 2010-3-19) Tobias, Carol R.; Rajabiun, Serena; Franks, Julie; Goldenkranz, Sarah B.; Fine, David N.; Loscher-Hudson, Brenda S.; Colson, Paul W.; Coleman, Sharon M.People living with HIV (PLWHIV) have been involved in the continuum of HIV care since the early days of the epidemic providing education and prevention services. There is a growing interest in utilizing HIV positive peers to support access to care and treatment, but little is known about the range of roles these peers perform and what they need to know to do this work. This study of 186 HIV-positive peers currently providing community health services in eight states found that peers perform a wide range of roles, including assistance with care and treatment, emotional support, and service referrals. Over 80% discussed medications with clients. On average, experienced peers provided correct responses to 73% of questions about HIV and AIDS, and 65% of questions about the appropriate role of a peer. Peers living with HIV for more than 5 years, in paid employment with more than a high school education had higher HIV knowledge scores than volunteers. Higher education, length of time living with HIV, age and speaking English as the primary language were associated with higher peer knowledge scores. This study suggests that we cannot assume that peers already working in the field are fully knowledgeable about HIV care and treatment or peer roles. It is important to address gaps in knowledge through continuing education and to create common standards for the training and skills that peers who work in community health settings need to have.Item A Functional Difficulty and Functional Pain Instrument for Hip and Knee Osteoarthritis(BioMed Central, 2009-7-9) Jette, Alan M.; McDonough, Christine M.; Ni, Pengsheng; Haley, Stephen M.; Hambleton, Ronald K.; Olarsch, Sippy; Hunter, David J.; Kim, Young-jo; Felson, David T.INTRODUCTION. The objectives of this study were to develop a functional outcome instrument for hip and knee osteoarthritis research (OA-FUNCTION-CAT) using item response theory (IRT) and computer adaptive test (CAT) methods and to assess its psychometric performance compared to the current standard in the field. METHODS. We conducted an extensive literature review, focus groups, and cognitive testing to guide the construction of an item bank consisting of 125 functional activities commonly affected by hip and knee osteoarthritis. We recruited a convenience sample of 328 adults with confirmed hip and/or knee osteoarthritis. Subjects reported their degree of functional difficulty and functional pain in performing each activity in the item bank and completed the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). Confirmatory factor analyses were conducted to assess scale uni-dimensionality, and IRT methods were used to calibrate the items and examine the fit of the data. We assessed the performance of OA-FUNCTION-CATs of different lengths relative to the full item bank and WOMAC using CAT simulation analyses. RESULTS. Confirmatory factor analyses revealed distinct functional difficulty and functional pain domains. Descriptive statistics for scores from 5-, 10-, and 15-item CATs were similar to those for the full item bank. The 10-item OA-FUNCTION-CAT scales demonstrated a high degree of accuracy compared with the item bank (r = 0.96 and 0.89, respectively). Compared to the WOMAC, both scales covered a broader score range and demonstrated a higher degree of precision at the ceiling and reliability across the range of scores. CONCLUSIONS. The OA-FUNCTION-CAT provided superior reliability throughout the score range and improved breadth and precision at the ceiling compared with the WOMAC. Further research is needed to assess whether these improvements carry over into superior ability to measure change.Item Evaluation of the Late Life Disability Instrument in the Lifestyle Interventions and Independence for Elders Pilot (LIFE-P) Study(BioMed Central, 2010-10-06) Hsu, Fang-Chi; Rejeski, W. Jack; Ip, Edward H.; Katula, Jeff A.; Fielding, Roger; Jette, Alan M.; Studenski, Stephanie A.; Blair, Steven N.; Miller, Michael E.BACKGROUND. The late life disability instrument (LLDI) was developed to assess limitations in instrumental and management roles using a small and restricted sample. In this paper we examine the measurement properties of the LLDI using data from the Lifestyle Interventions and Independence for Elders Pilot (LIFE-P) study. METHODS. LIFE-P participants, aged 70-89 years, were at elevated risk of disability. The 424 participants were enrolled at the Cooper Institute, Stanford University, University of Pittsburgh, and Wake Forest University. Physical activity and successful aging health education interventions were compared after 12-months of follow-up. Using factor analysis, we determined whether the LLDI's factor structure was comparable with that reported previously. We further examined how each item related to measured disability using item response theory (IRT). RESULTS. The factor structure for the limitation domain within the LLDI in the LIFE-P study did not corroborate previous findings. However, the factor structure using the abbreviated version was supported. Social and personal role factors were identified. IRT analysis revealed that each item in the social role factor provided a similar level of information, whereas the items in the personal role factor tended to provide different levels of information. CONCLUSIONS. Within the context of community-based clinical intervention research in aged populations, an abbreviated version of the LLDI performed better than the full 16-item version. In addition, the personal subscale would benefit from additional research using IRT. TRIAL REGISTRATION. The protocol of LIFE-P is consistent with the principles of the Declaration of Helsinki and is registered at http://www.ClinicalTrials.gov (registration # NCT00116194).