Category: Inaugaural Newsletter
Welcome to the inaugural newsletter for the Center for Enhancing Activity and Participation among Persons with Arthritis (ENACT)! This first issue of our newsletter will introduce our new Center staff and students, describe our recent achievements, and highlight upcoming events.
In only six months, we launched our website, created marketing materials, planned research studies, started several community programs, and hired new staff members. We also prepared our databases, recruitment materials, and training programs.
ENACT’s research program is actively underway. We are ready to start recruiting participants for our employment retention clinical trial, “Efficacy of a Modified Vocational Rehabilitation Intervention.” Additionally, we just finished a pilot study for our physical activity adherence trial, “Can Computer-based Telephone Counseling Improve Long-term Adherence to Strength Training in Elders with Knee Osteoarthritis?” We are eager to get these studies in the field.
This is just the beginning! Much more is under development.
Our first round of community education and exercise training programs were immense successes! We recently hosted our first Arthritis Foundation Consumer Forum, “Arthritis vs. You: Who’s Winning?,” at the People’s Baptist Church in Roxbury. We also offered our first Arthritis Foundation Exercise Program instructor training. These programs will be featured in this newsletter.
ENACT’s pre-doctoral training program has gained significant momentum! Our first fellow, a very promising fellow with an occupational therapy background from Jordan named Rawan AlHeresh, recently started. The applications continue to come in. If you’re interested in working with us, learn about our fellowships and contact us NOW!
Finally, we would like to acknowledge the wonderful work the Missouri Arthritis Rehabilitation Research and Training Center (MARRTC) who housed the NIDILRR Arthritis RRTC for the past two decades. MARRTC’s faculty and staff made numerous scientific and educational advances for the field of arthritis rehabilitation. We hope ENACT follows in their footsteps and makes the lives of people living with arthritis better.
Why are we here?
Arthritis and rheumatoid conditions can have huge, draining impacts on individuals and on our nation. The Centers for Disease Control and Prevention (CDC) recently reported that nearly 50 million people, about 20 percent of the adult population, have self-reported doctor-diagnosed arthritis. Of these diagnosed individuals, almost half of them experience difficulty with daily physical activity such as walking three blocks, climbing stairs, stooping, or grasping objects. Approximately 1/3 of people with conditions such as rheumatoid arthritis, Lupus, and Scleroderma cease working within ten years of diagnosis.
These statistics are staggering.
In addition to being both chronic and painful, arthritis also inhibits activities and limits participation. ENACT’s goal is to get these activities back. We hope ENACT’s programs will make a positive impact with and bring activity back to people’s lives.
Please keep in touch with us as we continue to develop our Center. We welcome your feedback as we create a Center that truly improves the lives of people with arthritis.
Julie Keysor and the ENACT Team
Julie Keysor, Director of ENACT, brought her expertise in both arthritis and physical activity promotion to a strategy meeting in Atlanta. On March 16, the Centers for Disease Control and Prevention (CDC) and the Arthritis Foundation hosted a meeting titled “Policies and Environmental Strategies to Increase Physical Activity among Adults with Arthritis.”
Keysor served on an expert panel to provide feedback and recommendations for proposed initiatives aimed at increasing physical activity among patients with osteoarthritis. The panel of 15 included experts from agencies such as the Centers for Disease Control (CDC), the National Council on Aging, the National Coalition for Promoting Physical Activity, and the American Association for Retired Persons.
Experts discussed initiatives that the CDC and Arthritis Foundation proposed in their recently-written white paper about identifying and overcoming both physical and environmental barriers to physical activity for persons with arthritis. This white paper was written in response to recommendations from A National Public Health Agenda for Osteoarthritis.
The end goal of this meeting was to solidify and prioritize proposed policies and strategies for moving a physical activity promotion agenda forward. Such an agenda focuses on five sectors: parks and recreation, worksites, built environments, health care, and public health, government, and non-profit.
Keysor called this experience “an exciting day to be at the table.”
Both the Massachusetts Arthritis Foundation and Boston University’s Center for Enhancing Activity and Participation (ENACT) are committed to providing arthritis support to underserved groups in their own communities. On Saturday, April 30, both groups co-sponsored a consumer forum titled “Arthritis vs. You: Who’s Winning?” The forum was held at Roxbury’s People’s Baptist Church (PBC) and was attended by 40 people. The forum emphasized the importance of staying active with arthritis.
Alveta Haynes, a project manager from Boston University’s School of Public Health and a member of People’s Baptist Church, kicked off the forum and described her own experiences with arthritis. Following the kickoff, the audience engaged in a group song.
Dr. Michael S. Thompson, Senior Orthopedic Surgeon with a specialty in joint replacement surgery at Lahey Clinic, spoke first. His talk, “Treatments of Arthritis of the Hip and Knee,” included both an overview of arthritis and a discussion of joint replacement surgery. Additionally, audience members saw actual components used in joint replacement surgery. PBC’s Reverend Jean-Luc Charles let the group in prayer before lunch.
Then, Dr. Maura Iversen gave a talk titled “Winning Strategies for Managing Osteoarthritis.” Dr. Iversen is both a professor and chairperson from Northeastern University’s Department of Physical Therapy. Her talk emphasized the importance staying active and suggestions for doing so, such as using adaptive equipment to protect joints. She then noted research studies that demonstrated that exercise can be as effective as some medications for pain reduction and symptom treatment!
The forum ended with a panel discussion titled “It Worked for Me! Real Life Stories about Thriving with Osteoarthritis.” Julie Keysor, Director of ENACT, led the discussion with Alveta Haynes. Both Keysor and Haynes shared stories about learning to live with arthritis and staying active.
All participants received pedometers to measure how many steps they take each day. The pedometer could help people increase their daily steps.
The emphasis on physical activity and setting manageable goals encouraged participants to take more control of their arthritis. One participant noted, “I learned that I have to do more to manage my arthritis. I will try to exercise more and manage my pain so that I can stay active.” Another participant stated, “I’m going to start an exercise program. I’ll use the stairs instead of the elevator. I’m going to start slowly and just keep working on doing a little more every day.”
Judith Levine, Vice President of Public Health, Arthritis Foundation New England Region, Massachusetts Office, considered the forum a “great way to start” ENACT’s mission of enhancing physical activity in persons with arthritis, particularly those from minority and underserved communities.
Stay tuned for more forums and community activities from ENACT and the Massachusetts Arthritis Foundation!
“It is an eye opener to see how simple activities can change the abilities of people with arthritis. Participants who complete eight weeks of classes are better able to do the things they want with less pain.” – Wendy Moore, Arthritis Foundation of Massachusetts, Exercise Training Educator
On March 26, 2011, the Center for Enhancing Activity and Participation among persons with Arthritis (ENACT) and the Arthritis Foundation of Massachusetts co-sponsored an exercise instructor training program at Boston University’s Sargent College of Health and Rehabilitation Sciences. Wendy Moore, veteran educator with the Arthritis Foundation and mother to a daughter with arthritis, led the program. Eleven participants, who typically have either an exercise or physical therapy background, completed the training program.
The training program included instructions about how to adapt exercises for people with arthritis. Trainees also developed a lesson plan for an arthritis exercise class. The participants are now in line to becoming certified instructors who can lead exercise classes for the Arthritis Foundation.
Trainees from this program made a commitment to organizing exercise program for people with arthritis. Laura Furey, BU physical therapy doctoral student, stated, “I will be using the training as part of my Physical Therapy Practicum Project, which is to promote exercise initiation among individuals with osteoarthritis.” Another BU physical therapy doctoral student, Stefanie Howlett, is “really excited to implement this program” and is “particularly interested in exercise adherence among people with arthritis.”
The Arthritis Foundation’s eight week exercise programs can have a huge and positive impact on patients with arthritis. Moore describes these programs as an “eye opener to see how simple activity can change the ability of participants.” The exercise programs are designed with gentle movements that help increase joint flexibility, range of motion, and muscle strength. Benefits from these programs include increased functional ability and self-care as well as decreased pain and depression. According to Moore, “participants who complete eight weeks of classes are better able to do the things they want with less pain.”
Though life-changing news may have negative impact on lifestyle and employment, strategies exist to lessen such impact. Dr. Saralynn Allaire, ScD, CRC-R was diagnosed with rheumatoid arthritis during her career as a nurse. She used various strategies to help her work as a nurse. Because the pain and fatigue from the disease hindered her ability to continue such a physically demanding career – she knew that she needed a change.
Dr. Allaire refused to let the diagnosis stop her and obtained advanced degrees to get a job that was not physically challenging. Upon learning that many people with arthritis experience work disability, she chose a field called rehabilitation counseling. Rehabilitation counselors help people with disabilities with employment and independent living issues. Before long, Dr. Allaire earned a doctorate in the field of rehabilitation counseling and joined a group of prominent rehabilitation researchers at Boston University Medical Center. Allaire, now both a Professor of Medicine and a prolific researcher, also serves as the associate director for the Center for Enhancing Activity and Participation among Persons with Arthritis (ENACT).
Her efforts focus on preventing work disability in individuals with arthritis and rheumatic conditions. Often these individuals are diagnosed while employed and Dr. Allaire wants them to stay employed. A randomized trial she conducted proved that vocational rehabilitation provided while persons were still employed helped them maintain employment. Therefore, Dr. Allaire’s research identifies effective intervention strategies and the best methods to deliver those interventions.
Another of Dr. Allaire’s major achievements is the development of a diagnostic tool called the “Work Experience Survey for Persons with Rheumatic Conditions,” or WES-RC. This tool, which is administered by a rehabilitation professional, identifies and prioritizes problems and barriers that individuals with rheumatic conditions face in the workforce. Based on the answers to these questions, the administrator and patient brainstorm to identify effective solutions. Preliminary results for this work, which Dr. Allaire co-authored with ENACT’s Dr. Julie Keysor, appear in a 2009 issue of Arthritis and Rheumatism.
Drs. Keysor and Allaire started working together about three years ago. Now that Dr. Allaire is planning for retirement, she is excited that Dr. Keysor wants to continue to focus on employment retention and rehabilitation research. Dr. Allaire serves as an associate director and consultant for ENACT. Her research interest overlaps with ENACT’s research project “Efficacy of a Modified Vocational Rehabilitation Intervention.” This study will further test the efficacy of the WES-RC diagnostic questionnaire. ENACT is currently recruiting research subjects for that study.
Stay tuned for more updates about ENACT and Dr. Saralynn Allaire’s work! Be sure to register for her upcoming webinar, Preventing Work Disability: Strategies and Resources You Can Use.