Center for Enhancing Activity and Participation among Persons with Arthritis

The Center for Enhancing Activity and Participation among Persons with Arthritis (ENACT) is a non-profit research center established to advance, disseminate, and apply knowledge in rheumatological rehabilitation—an interdisciplinary field that integrates rheumatologic, musculoskeletal, neurological, behavioral and social systems to optimize activity and participation among persons with arthritis. ENACT was founded October 1, 2010 at Sargent College, Boston University under the direction of Dr. Julie Keysor. The Center was awarded a $4,000,000 Rehabilitation Research and Training Center (RRTC) grant from the and is a successor to MARRTC as the only federally funded arthritis rehabilitation research and training center in the United States. ENACT will engage in research, as described below, and dissemination of information to academics, medical professionals and persons with arthritis. It will also train future researchers through the provision of pre-doctoral fellowships as well as guide the future of arthritis research by organizing a 'State of the Science Conference' for 2014.
Arthritis
Arthritis is a term that describes over 100 rheumatic conditions that are typically characterized by inflammation, tissue destruction, pain and stiffness of joint tissues (e.g., bone, cartilage, synovial fluid, ligaments, tendons, muscles and connective tissue). Arthritis is the most prevalent musculoskeletal condition of adults. Approximately 43 million adults in the United States—22% of the adult population—self-report physician-diagnosed arthritis. By 2030, 25% of the adult U.S. population is expected to have arthritis. Knee osteoarthritis (OA) is the most prevalent type of arthritis and affects approximately 37% of the adult population. Symptomatic knee OA—radiographic knee OA with frequent knee joint pain—is present in approximately 6% of adults over the age of 45 and 12% of adults over the age of 60. Gout, rheumatoid arthritis (RA), and systemic lupus erythematosus (SLE) are less prevalent affecting an estimated 3 million, 1.3 million, and 161,000-322,000 adults in the United States, respectively. Adults are not the only ones to get arthritis—294,000 children have juvenile arthritis.
Disability Due To Arthritis
Longitudinal studies among persons with inflammatory arthritis show significant risks of progressive disability in task performance and home and work roles. The literature on longitudinal disability outcomes among persons with knee OA is less robust, with the limited literature generally showing poor outcomes. In a sample of adults ages 65 and over who reported frequent knee pain, Miller et al. found that 45% experienced progression of disability over 15-months and 53% experienced progression over 30-months. Others show a decline in balance, strength, and function over time among older adults with symptomatic knee OA showed persons at risk for symptomatic knee OA have high rates of disease progression over 30-months—if disease progression were related to disability, this would suggest a high rate of disability progression. Other studies of persons with knee OA, however, which focus directly on participation, show little variation in the its mean score over 3 years but significant variation over time with about as many people improving in participation as declining.
Work loss, a type of participation restriction, specifically tied to work performance and employment, can be substantial among persons with arthritis and can have enormous impact on those affected. In clinical samples of persons with rheumatoid arthritis, 40-50% of persons are unemployed after one decade of disease. In the 2001-2002 National Health Interview Survey (NHIS) data, 31% of persons with arthritis—or 8.3 million people—with arthritis reported a work limitation that was at least partially related to their musculoskeletal condition. In recognition of the critical importance of work outcomes among people with arthritis and the limited evidence-based intervention approaches, the Centers for Disease Control Health People 2020 objectives and the current National Institute on Disability and Rehabilitation Research agenda specifically address work outcomes.
Arthritis Treatment
To date, there are no “cures” for arthritis. Current treatment for most rheumatological conditions focuses on disease management with the goal of preventing joint destruction, minimizing pain, and optimizing function. Significant advances have been made with current medications for RA and gout, but few medications exist for OA. Total joint replacement is typically the intervention choice for end-stage joint disease with the goal of improving pain and function and decreasing disability. Long-term outcomes, however, of joint replacements show mixed outcomes 2 years after surgery especially for knee replacement.
Non-invasive strategies are increasingly promoted for disease management and functional outcomes. Physical activity and strength training are now well recognized as critical components of disease management. However, despite the strong evidence supporting beneficial effects at decreasing pain and improving function, the vast majority of persons with arthritis are not meeting recommended levels of activity and exercise and adherence to programs is poor.
Recent research has drawn increased attention to the role factors outside of the biomedical model—e.g., the environment, social support, and empowerment—have on disability. Factors outside the biomedical model are clear targets of interventions aimed at work disability. Studies of the effectiveness of vocational rehabilitation work retention programs show that programs aimed at changing the work environment are more effective than those with a primarily medical approach.
Most of today’s intervention approaches treat disease processes or disease impairments (e.g., pain, strength). While critical, these interventions may not fully address the challenges people with arthritis face in the context of engaging in broader life roles such as work, volunteering, and engaging in social and community activities. Interventions aimed at these outcomes most likely need to incorporate elements beyond biomedical disease processes such as environmental and behavioral factors. These interventions, however, are sparse. ENACT was established to identify effective interventions aimed at optimizing activity and participation outcomes, foster exercise adherence, measure functional outcomes , and develop rheumatological rehabilitation scholars; in order to improve the lives of persons with arthritis.
Research Projects
ENACT's research is focused on examining and analyzing interventions designed to enhance recovery and mobility for those persons who have arthritic knee conditions. The research agenda is based on three research studies that have the potential to have an impact on arthritis research by shifting the paradigm from disease management and impairments to a focus on addressing activity and participation. The focus is on the dimensions of improved mobility, operationalized broadly to include activity (performance of tasks such as walking, climbing stairs, and opening doors) and participation (engagement in life situations such as community activities (e.g., dining in restaurants, visiting with friends, and participating in church activities) and work activities (paid and unpaid)).
Project One is entitled “Efficacy of a Modified Vocational Rehabilitation Intervention for Work Disability”; it is a randomized controlled trial examining the effects of two approaches on work disability outcomes. The Principal Investigator is Dr. Julie Keysor. This intervention involves preventive measures delivered by physical and occupational therapists to optimize work outcomes. This novel approach could be readily adopted into medical care settings and could lead to a paradigm shift in addressing work challenges for people at risk of work disability. Project Two is a randomized controlled trial of a novel physical activity adherence program for older adults with knee OA, entitled “Can computer-based telephone counseling improve long-term adherence to strength training in elders with knee osteoarthritis?” The Principal Investigator is Dr. Kristin Baker. It will make use of a telecommunication system to promote resistance strength training for persons who were previously engaged in a strength training program and examine outcomes in pain, functional activity (self-report and performance-based), and participation. Project Three, called “Community and Home Participation after Total Knee Replacement”, is an epidemiological and qualitative study examining factors associated with poor participation outcomes post total knee joint replacement. The Principal Investigator is Dr. Jessica Maxwell, with Co-Principal Investigator Dr. David Felson. This study will involve quantitative analyses of two large ongoing multi-center arthritis studies and qualitative interviews to explore people’s perceptions of factors that foster or restrict participation.

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