Director, Department of Institutional Research, Wichita State University, Kans.
Background: With her distinguished history of volunteer service to the AHRP, long years of membership, dedication to arthritis-related issues, and important contributions to rheumatologic research, Hawley exemplifies the ideal envisioned for the AHRP Lifetime Achievement Award, the highest honor bestowed by the organization.
Hawley’s interest in arthritis and related diseases was piqued by her early graduate school work at the University of Kansas with fellow ARHP member Professor Geri Neuberger. Her interest in the field accelerated when she took a faculty position at the School of Nursing at Wichita State University and ended up working with Frederick Wolfe, MD. Dr. Wolfe founded the National Data Bank for Rheumatic Diseases, a large, long-term arthritis-outcomes database with information on rheumatoid arthritis (RA), osteoarthritis, fibromyalgia, systemic lupus erythematosus (SLE), and related disorders. Looking back, Hawley sees this data compilation effort as being ahead of its time, because Dr. Wolfe collected “real-world” data rather than clinical trial data. Today, says Hawley, researchers appreciate how large databases like the National Data Bank for Rheumatic Diseases complement clinical trial data by providing a picture of actual clinical practice.
Hawley is the founding editor of Arthritis Care & Research (AC&R), now an official journal of the ACR. She has been a member of the faculty and administration at Wichita State for 30 years. For the past decade, she has been Director of Institutional Research for Wichita State, providing internal data on enrollment, retention, graduation rates, and faculty workloads.
Despite her heavy professional responsibilities, Hawley remains an active volunteer in her community. She works with the Women’s Crisis Center in Wichita and is also deeply involved with the Wichita branch of Soroptimist, an international volunteer organization for business and professional women who work to improve the lives of women and girls, particularly those trying to balance the demands of school, family, work, and other responsibilities. Hawley says she has always been interested in helping women in their careers.
Q: What were the early days of AC&R like?
A: It was an exciting time! The journal has come a long way from the early days, when it was a real struggle but very rewarding. At first, it was part of the Arthritis Foundation, and then it was moved over to the ACR. It’s now a highly respected journal, and I like to think I had a small part in that. The ACR and many individuals have really moved it forward.
Q: What aspects of the ACR and ARHP have been most valuable to you professionally?
A: The ACR and ARHP represent all the members of the rheumatology care team. The organizations bring physicians together with nurses, nurse practitioners, physician assistants, occupational and physical therapists, social workers, psychologists, and patients. I enjoy ARHP because it gives me a chance to interact outside the clinic with these other rheumatology professionals, giving us an opportunity to learn more about how our colleagues in other healthcare professions contribute to the care of patients with these diseases. We learn from each other, and I don’t see territorial issues like you sometimes hear about with other groups.
ARHP Award
ARHP Addie Thomas Service Award
Susan J. Wright, OT
Occupational Therapist, Department of Pediatric Rheumatology, University of Kansas Medical Center, Kansas City
Background: Wright has worked in the field of pediatric rheumatology for more than 30 years. The changes that have occurred in the diagnosis and treatment of patients with rheumatic illnesses during this time have been monumental and probably would have seemed unrealistic to anyone who, in the late 1970s, was guessing what the future held for children with rheumatic diseases. But Wright believes that she has always been able to provide assistance to young patients with rheumatic diseases and their families, whether she is splinting a joint or assessing psychometric functioning. Each year, the ARHP presents the Addie Thomas Service Award in honor of its first president, Addie Thomas, to recognize members who have been active volunteers with local, regional, and national arthritis-related activities. Over the past 20 years, Wright has been the recipient of more than a half-dozen community service awards from state, regional, and national arthritis advocacy organizations.
Wright received her occupational therapy degree from the University of Kansas. She worked for three years as an OT in pediatrics, and found a special affinity for children with rheumatologic disorders. The field was rewarding, she says, because she and her colleagues were able to make a difference in the lives of these children with exercise, splinting, pain management, and even teaching the very young ones how to swallow pills. Today, rheumatology professionals can provide even more help with the variety of medications that are available, but Wright still notes with pride the accomplishments of those days in the not-too-distant past.
In addition to working as an OT in the department of pediatric rheumatology at the University of Kansas, Wright has also had a distinguished career as a research assistant in that department. She has made substantial contributions to research assessing central nervous system involvement in children with SLE and muscle strength in young patients with juvenile dermatomyositis. Early identification led to earlier intervention long before lab results were abnormal and damage had become irreversible, and to improved outcomes.
Q: In your career, you’ve visited more than 100 legislative offices with the ACR/AHRP and the Arthritis Foundation. What is the key to successful advocacy?
A: Ann Kunkel [in whose honor the ARHP Advocacy Award is named, see p. 36] taught me how to intervene. Healthcare legislation intervention is difficult to achieve, because so many people seek this type of help from legislators on behalf of their own causes. I learned from Ann to target specific legislators on important committees with children from their own districts, emphasizing the importance of pediatric rheumatology care as opposed to orthopedic care or adult rheumatology care. Our legislators need to know that getting diagnosed early and having aggressive treatment makes a big difference in outcome for kids with rheumatic diseases.
Q: What is the biggest change you’ve seen in this field during your career?
A: About 18 years ago, I led a children’s activity workshop at the Arthritis Foundation annual conference. At that time, about 50% of children under the age of 4 who had a rheumatic disease were in a wheelchair. Today, it’s unusual to see a toddler in a wheelchair.
Q: What are the most significant clinical challenges you face today?
A: Thirty years ago, we’d see a child come in with permanent damage that was not preventable because we didn’t have good drugs. Today, it’s really frustrating to see a child come in with permanent damage because he or she hasn’t been seen by pediatric rheumatologist.
ARHP Award
ARHP Ann Kunkel Advocacy Award
Karen L. Kerr, MSN, NP, CPNP, PNP-BC
Nurse Practitioner, Division of Immunology, Allergy, and Rheumatology, Children’s Hospital of Michigan, Detroit
Background: Kerr has been interested in pediatrics from the outset of her nursing career. Her passion for pediatric rheumatology developed later, at about the time she became a nurse practitioner and a position in pediatric rheumatology came her way by chance. Her father had been a rheumatologist, and all the pieces fell into place when Kerr became a nurse practitioner in pediatric rheumatology at Children’s Hospital of Michigan in Detroit in 1993. She also took on teaching responsibilities in the graduate nursing program at Wayne State University College of Nursing in Detroit. Pediatric rheumatology has been a good match for Kerr.
Almost immediately after joining the ARHP in 1993, Kerr started volunteering for a variety of committees within the ARHP and ACR, as well as with the Michigan chapter of the Arthritis Foundation. She was president of the ARHP in 2006–2007. She has been an author and co-author of numerous publications for the ACR, ARHP, Arthritis Foundation, Michigan Department of Community Health, and American Pain Society. In 2009, she was the recipient of the ARHP Master Clinician Award and the ARHP 40th Anniversary Star Award.
Today, the shortage of pediatric rheumatologists is a major concern for Kerr. She says that, at any given time depending on the job market, between 11 and 13 states have no pediatric rheumatologists in practice. Further, there is also a shortage of adult rheumatologists, with a large increase in demand expected as the baby boomers age. Kerr sees a strong need to train nurse practitioners to work in both adult and pediatric rheumatology.
In addition, Kerr is a strong believer in enlisting healthcare providers and patients for advocacy activities. The challenges include helping healthcare providers understand that advocacy is an important part of medical practice and helping patients understand that, because they have a chronic illness, advocacy is a skill they will need throughout their lives.
Q: How do you find time to do volunteer work with your very busy schedule?
A: I have a very supportive family, and my husband is tremendous. My colleagues at work are also supportive, as was my former boss. And the ACR makes volunteering really easy!
Q: It’s obvious that you enjoy working for these professional organizations. What do you get from the experience?
A: The interdisciplinary networking that the ARHP provides helps me with a kind of interdisciplinary learning. I’ve learned so much about other disciplines—occupational therapy, for example—which is rewarding. We all work together on a professional level, but when you’re working with other healthcare providers in a volunteer setting, you get to see their passion and perspective, and you learn and respect what other disciplines bring to the table. It helps me grow as a nurse practitioner. And my patients benefit because I learn more about when to send patients to other types of providers, how to make the most of the referral, and how to better utilize services.
Q: Is there one message that you would give colleagues and patients about advocacy?
A: Advocacy doesn’t happen only in Washington, D.C. All of us have a responsibility to be aware of the need for advocacy and to be advocates for our patients, whether it’s with insurance companies or policy makers. We also need to help them learn to work within the system to overcome barriers to healthcare.
ARHP Award
ARHP Distinguished Scholar Award
Basia Belza, PhD, RN, FAAN
Aljoya Endowed Professor in Aging, Department of Biobehavioral Nursing and Health Systems, University of Washington, Seattle
Background: the 2010 ARHP Distinguished Scholar Award is Basia Belza, PhD, RN, professor of biobehavioral nursing and health systems and the Aljoya Endowed Professor in Aging at the University of Washington, Seattle. This award is presented to an individual who demonstrates exceptional achievements in scholarly activities pertinent to arthritis and the rheumatic diseases. Active in rheumatology practice for 30 years, Dr. Belza received her BSN, MSN, and PhD from Georgetown University, the University of Virginia, and the University of California, San Francisco, respectively. She has been president of the AHRP and a member of the board of directors. She was also co-editor of the first edition of Clinical Care in Rheumatic Diseases. This award is a tribute to her dedication to improving the lives of older adults.
Dr. Belza’s research targets a better understanding of fatigue in adults and older adults with chronic diseases: What are the underlying mechanisms? How can fatigue be measured? What are the best ways to manage this fatigue? When she started in this field, Dr. Belza’s patients would say that with pain, they could just find a different way to do something. But with fatigue, they felt they had no similar strategies to combat its overwhelming effects. Her doctoral dissertation included development of the Multidimensional Assessment of Fatigue (MAF) scale, which has been translated into 25 languages, with the result that awareness of fatigue in many conditions was increased among health professionals. She notes that all healthcare professionals are worried about fatigue in their patients. Physical and occupational therapists, for example, are concerned when patients are too tired to participate in therapy.
Just being able to acknowledge that fatigue is a “real thing” is helpful to patients, says Dr. Belza. There are multiple causes of fatigue, including the disease process itself, sleep deprivation, depression, anemia, and inactivity, to name a few. Because there are so many possible causes, she explains, there are multiple approaches to management. Many people find that, paradoxically, an increase in their physical activity level increases their energy level after an initial, tiring period of adjustment.
Q: Can you describe at least one major change that has occurred in this field since you started?
A: I think that researchers in many areas of medicine have embraced fatigue as an important symptom. About the time I started developing the fatigue instrument, people started listening to patients about fatigue. Pharmaceutical companies started listening, too, and began to look at fatigue as an outcome in clinical trials.
Q: How have you meshed your study of rheumatology with public health concerns?
A: The more I measured fatigue and tried to understand its mechanisms, the more I wanted to help deal with the problem. Physical activity is an important way to address inactivity and fatigue, and I wondered what we could do to provide community-based programs with more access. There are lots of programs like Sit and Be Fit that are available in-home and at senior and community centers. I have been involved with www.enhancefitness.org through Senior Services in Seattle, and that program is available in 30 states. The University of Washington serves as a research partner, and we’ve helped get evidence that the program is helping, not hurting, and improving balance, strength, flexibility, and aerobic conditioning in aging adults.
ARHP Award
ARHP Master Clinician Award
Karla Jones, RN, MS, CPNP
Pediatric Nurse Practitioner, Nationwide Children’s Hospital, Section of Rheumatology, Columbus, Ohio
Background: Jones is the recipient of the 2010 ARHP Master Clinician Award. This prize is presented each year to an individual who is engaged in clinical practice and demonstrates outstanding clinical expertise in arthritis and the rheumatic diseases, a description that fits Jones well. After receiving her BS and MS degrees from Bowling Green State University and Virginia Commonwealth University/Medical College of Virginia, respectively, she began working at Nationwide Children’s Hospital. Jones preferred working with outpatients, and found an opening in pediatric rheumatology at Nationwide. One of the largest standalone pediatric hospitals in the U.S., Nationwide Children’s serves the people of central Ohio and also draws patients from eastern Canada and Mexico. Since 1986, Jones has provided clinical care, served as nurse coordinator and co-investigator for numerous clinical research studies, been an educator and mentor to nursing students and colleagues, and been a contributing author to two nursing textbooks.
What really kept Jones in this field, however, were the kids and their common adversary—rheumatic diseases. Jones says she’s grateful for the opportunity to have established long-term relationships with her patients and says she would have found it frustrating to work in a specialty area in which this is more difficult because one sees a patient briefly just once or twice a year. The complexity of juvenile rheumatic diseases and the intellectual challenges they provide have kept her engaged in the field for more than a quarter century. The most common diagnosis among her patients today is juvenile idiopathic arthritis (JIA), formerly known as juvenile RA.
Jones has volunteered with the Arthritis Foundation for many years, and is particularly grateful that the organization has supported the Pediatric Rheumatology Camping Weekend, which she coordinates, as well as other programs that involve entire families. She felt humbled to win the Master Clinician Award and was honored to be recognized with other accomplished and hard-working rheumatology professionals.
Q: You coordinate the Pediatric Rheumatology Camping Weekend for the Arthritis Foundation. How does that event benefit the children and families who attend?
A: We just had our 20th year with the Camping Weekend. This sticks in my mind because I was pregnant with my son during the first event, and he just turned 20! Many children with a pediatric rheumatic disease feel isolated. The Camping Weekend gives them an opportunity to meet other kids with similar symptoms and treatments and who also have to go through the rounds of doctor visits and lab tests. It helps them lose some of that isolated feeling.
Q: Do they have a routine camping experience, with swimming, crafts, and similar activities?
A: Yes, our campers have access to all the usual camping activities, but in addition, we give them group discussion time. We think this is quite valuable because they share ideas about how to explain your disease and its treatment to your friends, how to cope with pain, and how to manage the other difficulties that come with a disease like JIA. A single weekend isn’t really enough, and we hope to be able to offer a week-long camping event soon.
ARHP Award
ARHP Master Educator Award
Marian T. Hannan, DSc, MPH
Co-director, Musculoskeletal Research Center, Institute for Aging Research, Hebrew SeniorLife, Boston
Background: By the mid-1980s, Dr. Hannan had done enough work in the fields of cancer and birth defects to know that she wanted a change. She wanted to work in a disease area where she could make a contribution and a difference, and this led her to musculoskeletal disorders. For her, it was a good decision, and Dr. Hannan is the 2010 ARHP Master Educator Award winner. This award is presented annually to honor an ARHP member who has demonstrated sustained excellence in teaching of health professional students, medical students, residents, graduate students, and/or fellows, with their primary focus being rheumatology-related content. Dr. Hannan is now associate professor of Medicine at Harvard Medical School and a senior scientist and co-director of the Musculoskeletal Research Center at the Institute for Aging Research at Hebrew SeniorLife in Boston. Her major areas of research include the epidemiology of age-related osteoporosis and arthritis, the influence of foot disorders on physical function and falls, and the impact of various risk factors, especially dietary ones, on bone loss in elderly adults.
For Dr. Hannan, the reward for dedicating her professional efforts to musculoskeletal disorders is what she calls the fascinating and far-reaching finding that for common rheumatologic diseases, everything is modifiable. She recalls that health professionals used to tell patients that, because they had a degenerative disorder, little could be done for them. Now, the situation is changed because so much can be done to modify pain and even the progression of the disease. Making modifications to help older people, and even to help younger adults stay active, is even more important with the growing understanding of the importance of physical activity to healthy aging.
Dr. Hannan is a board member for the U.S. Bone and Joint Decade, an initiative designed to promote awareness of musculoskeletal disorders. One benefit of this initiative is that today, 100% of American medical schools teach students how to perform musculoskeletal exams; six years ago, most schools did not include this skill in the curriculum, even though musculoskeletal disorders are a main reason adults over age 50 see a physician.
Q: What is the biggest change that you’ve observed personally in public health initiatives during your career?
A: Just looking at changes in generations of my own family, I know that we pay more attention to health issues and ways to change our own situations than family members did back in the 1960s. We know we have more control now than they did then. We have the information and the products to make changes like becoming vegetarian, or cutting our dietary fat consumption in half. The information we need is right there on the nutrition label.
Q: Were you surprised to win the Master Educator Award?
A: This was a totally unexpected recognition because I consider myself a researcher, not necessarily an educator. But this award process helped me take my own blinders off. Many letters were written to support me, and they made me aware of educational partnerships that existed, but that I wasn’t really aware of. It’s good to know you’ve made a difference in someone’s life. Every little droplet that each of us contributes matters, and these small educational or research conversations we all engage in every day can add up to a much bigger picture.
ARHP Award
ARHP President’s Award
Edward H. Yelin, PhD
Professor of Medicine (Rheumatology) and Health Policy, University of California, San Francisco
Background: Dr. Yelin shares this year’s ARHP President’s Award with Patricia Katz, PhD. The award is presented to the ARHP/ACR member or team that has provided outstanding service during the current year to advance the goals, ideals, and standards of ARHP. Dr. Yelin and Dr. Katz are long-time colleagues and co-editors of Arthritis Care & Research (AC&R), an official journal of the ACR. Dr. Yelin’s research group examines the impact of rheumatic disease on individual people and on society. In his own research, he has explored employment issues and the impact of healthcare system changes among persons with RA and SLE and studied the relationship between disparities in access to care and outcomes. He has authored hundreds of publications in the course of his career.
Much of Dr. Yelin’s research concerns the relationship between the labor market and how people with chronic diseases manage in that market, with some emphasis on the differential impact of various illnesses. In patients with RA, for example, the nature of the workplace, working conditions, and the state of the economy all determine job loss, he says. In RA, with its alternating periods of flare and remission, patients can often work with employers to control the time they can put into their work. During a flare, for example, when they need to see their physicians, they can often manage their workload and gain control over the pace of work. This underscores the importance of workplace autonomy for patients with RA, he says. In contrast, the impact of lupus on a patient’s work performance is driven more by the severity of disease and its specific manifestations. In patients with lupus, he says, the disease trumps everything.
Along with his colleagues, Dr. Yelin is examining how a person’s own background, place of residence, and type of community affects the kind of care that is received and the long-term outcome of care for lupus. In this National Institutes of Health– funded project, they will also investigate whether there are separate effects of being poor or of living in a low-income area on lupus care and outcome.
Q: How did you become involved with rheumatology?
A: It was an accident of history. I was hired by my mentor when I was a graduate student at the University of California, Berkeley and working on some health policy issues related to chronic disease. Rheumatic diseases are among most common chronic conditions, and they have tremendous health policy implications. And the diseases themselves are also interesting.
Q: What’s it like to work with your co-winner, Dr. Katz?
A: There isn’t a day that I work with her that I don’t learn something. She has great insight and research judgment. These traits also help when we’re editing the journal. She has good judgment about what’s good and new, versus what’s just OK. She also has a good sense of humor, which is great when you work with someone every day.
ARHP Award
ARHP President’s Award
Patricia P. Katz, PhD
Professor of Medicine (Rheumatology) and Health Policy, University of California, San Francisco
Background: Dr. Katz, PhD, is the co-winner with Dr. Yelin of the ARHP President’s Award for 2010. She has spent 24 years at the University of California, San Francisco. She has been an active member of AHRP for 20 years, serving on several committees over the years and acting as associate editor of AC&R from 1994 to 2005. She is currently co-editor of AC&R with Dr. Yelin.
Dr. Katz’s research has redefined disability in the context of rheumatic disease and provided a more comprehensive view of disability than in the past. Dr. Katz says that the seeds of this work were planted while she was in conversation with clinicians who would describe two patients who appeared to be in similar condition and at a similar stage of their disease, but whose lives were very different. She says she decided to start her investigation by determining what each group of patients was doing differently. She found that life looked bleaker to those who felt they couldn’t do the things for themselves that mattered to them, such as caring for their children or grandkids, walking with friends, or doing whatever gave spice to their lives.
How is this information valuable in a clinical setting? Dr. Katz believes that one starts by asking patients, “Can you do the things you want to do?” If the patient answers, “No,” you have found your starting point, she says. It may not be possible to undo existing damage, but there may be different ways to deal with damage. A medication may lead to symptom improvement. Patients can get help resetting priorities and finding activity replacements. For example, a patient may no longer be able to walk with friends, but she could still meet them for coffee afterwards and get the benefits of the social interaction. These tasks require mental flexibility, which may take some outside help, she says. The stakes are high, because her research has found that the loss of these activities increases the risk of depression. She describes a dangerous spiral that starts with the loss of the activity, followed by depression, which lowers the ability to cope and reframe problems. Interrupting the process is crucial. Depression treatment may give the patient better coping resources, or improving functioning and finding new outlets may lessen the burden of the illness. The message: It’s important to look at a bigger picture and set the bar higher than opening jars or taking a bath when assessing disability. With physician time at a premium, Dr. Katz looks for more integration of care among physicians, nurses, and various types of therapists.
Q: What have you learned in your work with patients with other chronic illnesses, such as adult asthma and chronic obstructive pulmonary disease?
A: We find the same relationships. The risk for depression increases when patients with these disorders lose the ability to do what’s important to them. It’s consistent with our findings in people with lupus and RA.
Q: Have you enjoyed working with your colleague, Ed Yelin, as an editor of AC&R?
A: We have just a few more months of editorial work before our term is up! This was actually a natural outgrowth of our other collaborations together. It’s been great. Our offices are even right next to each other.
Mary Desmond Pinkowish is a medical journalist based in New York.
