Arthritis State of the Science Meeting Executive Summary
April 7th, 2014
The Arthritis State of the Science meeting on Promoting Activity and Participation among Persons with Arthritis took place on April 7th, 2014 in Pentagon City, VA. The meeting was hosted by faculty and staff from the Boston University Center for Enhancing Activity and Participation among Persons with Arthritis (ENACT) and supported by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR award H133B100003).
Objective: To create a dialog among experts in the field with the goal of moving the arthritis activity and participation research agenda forward.
NIDILRR’s Rehabilitation Research and Training Centers (RRTCs) conduct coordinated and integrated advanced programs of research and dissemination to produce new knowledge to improve rehabilitation methodologies and service delivery and promote maximum social and economic independence for persons with disabilities.
Twenty-two individuals recognized nationally and internationally as experts in the fields of rheumatology, physical therapy, occupational therapy, public health, occupational health, and physical activity promotion participated in the meeting as a presenter, moderator, or panel member. The speakers represented academic, clinical research and public policy entities across the United States and Canada.
In addition to the presenters and three ENACT staff members, 75 people attended the meeting. The participants represented a highly diverse group including academic researchers, clinicians, Arthritis Foundation staff, and public policy advocates from public health and rehabilitation professions.
- NIDILRR Funding Opportunities in Rehabilitation Research (Presenter: Theresa B. San Agustin, MD, Program Officer, NIDILRR)
- Arthritis from the Public Health Perspective (Presenter: Teresa Brady, PhD, Senior Behavioral Scientist in the Arthritis Program, Centers for Disease Control and Prevention)
- Rheumatological Rehabilitation: How Are We Doing? (Presenter: Julie Keysor, PT, PhD, ENACT Center Director)
NIDILRR Funding Opportunities in Rehabilitation Research (Presenter: Theresa San Agustin)
Dr. San Agustin described NIDILRR’s 3 guiding principles: 1) balance resource allocations across 3 dimensions of health and outcomes for people with disabilities: i) employment, ii) community living and participation, and iii) health and function; 2) balance populations of focus; and 3) balance whether NIDILRR or the grant applicant defines the specific approach to a disability or research topic. Furthermore, NIDILRR aims to support high quality research, training, technical assistance and dissemination activities that have the potential to have a beneficial impact on individuals with disabilities.
Dr. San Agustin remarked on the need to have more high-quality arthritis research projects sponsored through NIDILRR noting only 21 Arthritis research projects have been funded since 1983.
Arthritis from the Public Health Perspective (Presenter: Teresa Brady)
Why does “Arthritis” need Public Health? Answer: Most “health care” takes place outside of the health care delivery system (if a person has a 30 minute visit 3 times a year, less than 0.02% of that time is spent with a health care provider.
In the first keynote address, Dr. Brady described the “public health” nature of arthritis, providing an overview of the definition of arthritis and the impact arthritis has on individuals and public health. Specifically, she addressed the question: “Why is Public Health Interested in Arthritis?”
- Arthritis is a large and growing problem: 52.5 million people have arthritis; 22.7 million are limited in activities; 9,500 deaths are attributed to arthritis; prevalence continues to grow and by 2030, 67 million people will have arthritis
- Arthritis seriously impacts peoples’ lives: Arthritis is the leading cause of disability among U.S. adults; arthritis is a leading cause of activity limitations
- Arthritis is costly to people, families and society: Direct costs (US 2003 estimate) $81 billion; indirect Costs ($47 Billion); total $128 Billion (~1.2 % of Gross National Product)
- Something can be done about it:
- Primary Prevention: Prevent disease onset (injury)
- Secondary Prevention: Early recognition and treatment
- Tertiary Prevention: Preventing disability or disease complications (implement strategies with the strongest evidence)
Dr. Brady also noted the complex interactions among arthritis, obesity, diabetes, and cardiovascular disease, noting each one of these conditions can lead to or result from the other diseases. She furthermore noted common barriers to exercise: fatigue, lack of time, no exercise buddy, not a priority, pain (before, during, and after exercise), perceived negative outcomes, no specific program, no specific information (type or amount of exercise), weather, and not mentioned by the doctor.
Rheumatological Rehabilitation: How Are We Doing? (Presenter: Julie Keysor)
Arthritis is clearly a public health threat. Why should rehabilitation professionals care? Why this meeting? How are we doing?
In the second keynote address, Dr. Keysor reminded the audience that arthritis was a disability threat: Arthritis is the leading cause of disability in the US; 23 million people have activity limitations due to arthritis; approximately 30% of people with arthritis conditions are unemployed within 10 years of initial diagnosis.
As a means to evaluate the field and set the stage for determining the future directions of arthritis rehabilitation efforts, Dr. Keysor reviewed the past, present, and future needs of arthritis and rheumatology rehabilitation. Noting tremendous advances over the past 25 years, she cited clinical practices in the 60’s, 70’s and 80’s that primarily involved gentle range of motion exercises and hot and cold modalities. Dr. Keysor highlighted several areas of progress over the past couple of decades: 1) medications for inflammatory conditions, 2) exercise: people with arthritis can exercise without making the joint symptoms or disease processes worse; 3) recognition that arthritis can cause severe work disabilities and that interventions focusing on job accommodations can enhance employment retention, 4) acknowledgement that participation is an important outcome, and 5) significant increase in the volume of research on arthritis and pain, function, and disability outcomes over the past three decades (e.g., in 1980’s there were approximately 1000 studies on pain and 500 studies on functional outcomes; in 2000’s there were approximately 7000 studies on pain and 3500 studies on functional outcomes).
Nonetheless, Dr. Keysor noted several gaps:
- Exercise adherence (44% of people with arthritis are inactive, compared to 36% of older adults; 13% of older adults engage in recommended levels of strength training exercises)
- Work disability continues to be a threat (some but limited evidence regarding interventions to sustain employment status and minimize work limitations; need research that translates effective approaches to practice)
- Participation (participation restrictions are still present; little is known about how to enhance participation; little is known about how to promote participation in the rehabilitation setting)
Dr. Keysor also noted some upcoming challenges and opportunities that may impact these gaps:
- Aging population demographics
- Obesity trends
- Increases in pain reporting over time
- Increases in total joint replacement
Dr. Keysor summarized by noting upcoming needs:
- Better outcomes from rehabilitation therapies
- Better ways to foster physical activity adherence
- Better ways to promote employment retention
- Effective approaches, most likely interdisciplinary in nature, that truly improve the lives of people with arthritis
- Knee Pain/OA: Physical Therapy and Occupational Therapy Approaches (Presenters: Drs. G. Kelley Fitzgerald, PhD, PT, FAPTA, Director of the Physical Therapy Clinical and Translational Research Center, University of Pittsburgh and Susan Murphy, ScD, OTR, Research Associate Professor, University of Michigan’s Institute of Gerontology )
- A Critical Look at Knee Replacement Outcomes (Presenter: Jessica Maxwell, PT, DPT, OCS, Clinical Assistant Professor, Boston University)
The first session of the meeting began with a joint session titled, “Knee Pain/OA: Physical Therapy and Occupational Therapy Approaches.” Dr. Susan Murphy noted the numerous clinical practice guidelines that support non-pharmacological management strategies for knee OA including exercise, self-management, and assistive device use. She noted that if referral to occupational therapy clinical services occurs, it is late in the disease process. Compounding the problem, however, is the limited research establishing a positive impact of occupational therapy on health outcomes among people with knee OA.
Dr. Murphy challenged the philosophy of “fix the disease, fix the problem” in knee OA and proposed a paradigm shift in OA rehabilitation: “OA ‘disease’ may not be the problem.” Supporting this premise, she cited the strong evidence noting the complex pain experience in OA (generalized/widespread pain, centralized pain, and peripheral pain), fatigue, low physical activity, depression, and other psychosocial factors. Rehabilitation approaches therefore may need to address CNS sensitization, activity pain, and behavioral self-management.
Addressing physical therapy approaches for knee OA, Dr. Kelley Fitzgerald discussed i) dosage, ii) manual therapy, and iii) motor learning. Current strength training dosage recommendations are 60-80% 1RM, 8-12 reps, 1-3 sets, with 1 minute rest between sets. Power training can also be incorporated 30-60% 1 RM, 6-10 reps, 1-3 sets at higher repletion velocity. For endurance training, recommendations include lighter loads (50-60%) with higher reps (10-15). Progression of strength training intensity by increasing the load by 2-10% should be considered as a percent of a repetition maximum and by “effort” on perceived exertion scales. All strength training exercises should be pain-free for people with arthritis. Aerobic training dosing is for 30-60 minutes per session at 50% to 70% heart rate reserve. The target heart rate = 220-age-(resting HR x % HRR) + resting heart rate.
Dr. Fitzgerald also discussed joint mobilization and biomechanical approaches for the treatment of knee OA. Indications for joint mobilization include pain and joint capsule motion limitations. Citing the few studies examining the effects of manual therapy and exercise for knee OA, he noted that the evidence supports a possible benefit of manual therapy but that more research is needed. Biomechanical approaches such as use of a cane in the contralateral side, gait retraining, and task-specific training can decrease pain and improve gait mechanics and task performance.
In the 3rd talk of this session, Dr. Jessica Maxwell examined knee replacement outcomes, focusing on social participation. Using data from the Multicenter Osteoarthritis Study (MOST), social participation improved 4 points in the 1 year after a knee replacement (using the Late Life Disability Instrument, Instrumental Limitation subscale with a range of 0-100). Noting that this score may not reflect meaningful change, Dr. Maxwell reported that 38% of participants had participation restriction at baseline; whereas, 30% had participation restriction at 1 year follow-up. This finding follows a similar trend showing approximately 1/3 of participants have persistent pain and functional limitations after knee replacement.
- Behavioral Strategies to Improve Adherence: The Experience of Fit & Strong (Presenter: Susan Hughes, DSW, Professor at the Institute of Health Research and Policy, University of Illinois at Chicago)
- Innovation in Technology to Improve Adherence (Presenter: Kristin Baker, PhD, Assistant Research Professor, Boston University)
- Environmental Approaches for Promoting Physical Activity Adherence in People with Chronic Conditions and Disability (Presenter: James H. Rimmer, PhD, Lakeshore Foundation Endowed Chair in Health Promotion and Rehabilitation Sciences, University of Alabama at Birmingham)
Dr. Susan Hughes discussed the Fit & Strong Program to improve exercise adherence in the first talk of this session. Fit & Strong is a multicomponent physical activity/behavior change program theoretically informed by the Social Cognitive Theory that is designed to enhance physical activity and exercise among older adults with lower-extremity pain and stiffness. The program is 8 weeks in duration and includes physical activity and group discussion/problem solving components. In a randomized controlled trial, Fit & Strong participants demonstrated higher self-efficacy and higher total exercise minutes. An effectiveness trial showed a beneficial impact on frequency of physical activity at 18 months. Fit & Strong was also evaluated as a dissemination and translation study and found to be effective at improving joint symptoms as well as physical activity. Fit & Strong has trained over 169 instructors and 60 sites have implemented the program. Over 2475 participants have completed the program. Fit & Strong is currently being considered as a possible “anchor” program for possible suitability of Medicare reimbursement.
In the second talk of this session, Dr. Kristin Baker discussed the potential of technology to change (and sustain) behavior. Dr. Baker first noted the historical developments of the human race with respect to technology and the current global explosion of technology across all populations. She noted the growing use of internet and cell phones across all age groups, including older adults. Lastly, she noted the new trend of “The Quantified Self” (New York Times 3/10/2014), or the increasing trend for people to use wearable devices. “Wearable devices” allow real time tracking by individuals to monitor their activity as well as symptoms. Adherence to wearable sensors is about 50% at 2 years. Dr. Baker noted the optimal mechanism for technology to change behavior will be approaches that integrate technology with principles of behavior change. Lastly, Dr. Baker described her ongoing physical activity adherence trial: the Boston Osteoarthritis Strength Training Trial (BOOST). BOOST is evaluating a new telephone-linked communication (TLC) system that integrates principles of behavior change (e.g., self-efficacy and goal setting) in a computer-administered motivational program delivered to older adults with knee pain after completion of a 6 week exercise program. Preliminary results from the BOOST study show that about 50% of the subjects have connected to all the TLC calls, with the rest connecting to between 31% and 85% of the calls. The majority of the TLC calls are completed, with the average time on the calls 6.43 minutes. Incomplete calls are on average 3 minutes and 25 seconds long. Lastly, Dr. Baker described a new technology: the virtual exercise coach that is currently being evaluated in Parkinson’s Disease.
The 3rd speaker in this session, Dr. James Rimmer, addressed environmental approaches to promoting physical activity from the perspective of a broader disability population—i.e., adults with various disabling conditions. Among adults with chronic health conditions and disability, pain, cost, transportation, lack of accessible facilities, and lack of energy are common barriers to exercise. Dr. Rimmer described the SELECT model of physical activity adherence: Socially engaging exercising environments; Enjoyable environments; Learning environments; Exploratory environments; Competitive environments; Task completion environments. Dr. Rimmer advocated for new models of care that transition people with chronic conditions and disabilities from recovery to health, through rehabilitation to functional exercise to fitness to conditioning to health maintenance.
Session 3: Promoting Activity and Participation in the Work Place
- Innovations Using Technology to Closing the Gap between Clinic and Workplace (Presenters: Karen Jacobs, EdD, OTR/L, CPE, FAOTA, Clinical Professor Boston University & Nancy A. Baker, ScD, MPH, OTR/L, Associate Professor, University of Pittsburgh)
- Employer Innovations for Sustaining Employees—What does the Science Say (Presenter: Glenn Pransky, MD, M.Occ. Health, Director of the Center for Disability Research at the Liberty Mutual Research Institute for Safety)
- Community-based Interventions to Sustain Employment (Presenter: Julie Keysor, PT, PhD, ENACT Center Director)
The first co-speakers in this session described the use of telehealth in rheumatological rehabilitation, which is a scientific discipline concerned with understanding the interactions among humans and other elements of a system, and the profession that applies theory, principles, data, and methods to design in order to optimize human well-being and system performance. Drs. Jacobs and Baker described the benefits derived from using teleheath, which range from improving service delivery efficiency to promoting client-centered care. They discussed the methods of use as well as the models of care in teleheath. Applications and examples of telehealth were also presented, such as tele-ergonomics.
In the second talk, Dr. Keysor presented community based interventions to sustain employment, which were described as programs delivered in the community that were not workplace or healthcare settings. Dr. Keysor explained the importance of work disability and why a community approach was necessary. She further explained that job accommodations could be a solution to sustain employment for people with arthritis and other rheumatic conditions. Dr. Keysor reviewed a previous study which examined the effectiveness of a vocational rehabilitation employment retention program conducted in the community, which showed that meeting with a vocational counselor reduced the incidence of work cessation when compared to another group who did not receive this service. Moreover, Dr. Keysor discussed potential ideas for the future and described the “Work it” study as a promising approach.
The third speaker, Dr. Glenn Pransky addressed what science can say about innovations to sustain employees. He started by emphasizing that clinical severity is not strongly associated to work disability. He explained that the main risk factors for people with arthritis who did not return to work were workplace conflict, workplace inflexibility, fear of injury and not planning to return to work. Moreover, Dr. Pransky described some return to work interventions for a number of health conditions including low back pain. He also summarized the strategies that enable ill workers to stay at work, like changing work stations and schedules, personal coping, and support from others.
The meeting’s Keynote luncheon featured Jan K. Richardson, PT, PhD, OCS, FAPTA, Professor Emeritus at Duke University Medical Center and Chief Medical Officer at Priority Care Solutions, in a speech titled “Moving Together – Changing Lives!” As former president of both the Association of Rheumatology Health Professionals (ARHP) and American Physical Therapy Association (APTA), Dr. Richardson offered the unique perspective of someone who has spent time as a professional in the two main fields represented at the meeting: arthritis care and rehabilitation. In the context of a comprehensive overview of the history of the efforts of these two fields, she delivered an energetic talk, finishing by issuing an international call to action on physical activity and participation as key components of arthritis care.
Panel on International Policy Initiatives
- Patience White, MD, MPH, Co-director, The Center for Health Care Transition Improvement
- Janet Yale, LLB, MA, President and CEO, The Arthritis Society of Canada
As the meeting neared its close, a discussion on broader policy initiatives brought back in the Public Health perspective. Two prominent arthritis policy advocates spoke on international initiatives, representing perspectives from the United States and Canada. Dr. Patience White, formerly Vice President for Policy and Advocacy with the Arthritis Foundation, began by reinforcing the impact that arthritis has on the US population from individual activity limitations to national medical expenditure costs. The Arthritis Foundation identified the areas of broad need, research to advance treatment, access to treatment, and development of trustworthy resources for people with arthritis. Janet Yale, President and CEO of The Arthritis Society, followed with her own characterization of the current impact of arthritis in Canada. Also emphasizing research and access, she discussed importance of system-level collaboration to develop appropriate patient-centered models of care and increase access to evidence-based treatment.
Summing Up: Stakeholder Reflections
The State of the Science meeting concluded with a lively panel discussion stimulated by thoughtful comments and questions from the audience. The panel discussion was moderated by ENACT Director, Julie Keysor. Panelists represented a multidisciplinary perspective and included:
- Catherine Backman, PhD, OT(C), FCAOT, Professor and Head, Department of Occupational Science & Occupational Therapy, University of British Columbia (UBC) and Research Scientist, Arthritis Research Centre of Canada.
- David Felson, MD, MPH, Professor of Medicine and Epidemiology, and Chief of the Boston University Clinical Epidemiology Research and Training Unit
- Susan Lin, ScD, OTR/L, Director of Research for the American Occupational Therapy Association
- Nancy White, PT, DPT OCS, Associate Director for the Department of Practice at the American Physical Therapy Association
Discussion focused on initiatives to advance rheumatological rehabilitation and three important themes were identified:
- Payment issues and the need for cost effectiveness research
The need for change in patterns of payment and decision making was discussed. It was noted that there are problems regarding payment for interventions that have a long-term impact. Cost effectiveness analysis, including quality-adjusted life years and healthcare utilization, can be used to better quantify cost savings from interventions with a longer term impact. The Affordable Care Act (ACA) and Accountable Care Organizations (ACOs) were discussed as initiatives that emphasize a longer-term perspective in providing care.
- Professional identify and role, including preparing students and clinical education
Discussion focused on the need to change the culture of our professions. Based on new and emerging models of care, the professional identities of rehabilitation practitioners should be expanded to include an active role in communities and the public health arena. Educational programs must move beyond a narrow focus on biomedical approaches to include content pertaining to bio/psychosocial approaches to care. The clinical training environment for students is often not ideal and there are system problems that must be addressed. The current clinical programs are inadequate for providing appropriate clinical education experiences. To change the professional culture, we can look at early adopters and promote adoption of best practices.
- Service delivery models, including public health and knowledge translation to ‘scale up’ implementation of evidence-based interventions
There was discussion of the inadequacy of current healthcare delivery models. We are likely to get the best outcomes when treatment starts early in the disease process, but patients are not being seen until a problem becomes significant. In a transition to a public health model, there is a need to understand when unique therapy skills are needed and care from other providers can be leveraged. We need to adopt models for knowledge translation and facilitate communication of effective interventions.
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