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ABSTRACT: The intensive, individualized management algorithm incorporated into the “treat to target” approach to rheumatoid arthritis includes an expanded role for the rheumatology nurse. Recently added job responsibilities for nurses include in-depth patient evaluation, care coordination assistance, referral facilitation, and patient self-management education and support. However, there is a critical shortage of trained rheumatology nurses. Recently published recommendations for nurses in managing chronic inflammatory arthritis provide a clear framework for future role development, but determining the specifics for implementing them is challenging. Nurse-rheumatologist teams can have a positive influence on patients' knowledge, satisfaction, and pain and provide clinical outcomes as successful as those provided with usual rheumatologic care. Rheumatology nurses are well positioned to participate actively in the increasingly complex care management activities that are required.
The current “treat to target” approach to rheumatoid arthritis (RA) incorporates an intensive, individualized management algorithm that includes an expanded role for the rheumatology nurse. In 2010, an international task force provided recommendations for achieving optimal treatment outcomes in RA based on the following 4 principles: (1) promoting shared decision making between the patient and the rheumatologist; (2) maximizing patients' quality of life through symptoms control, joint damage prevention, function normalization, and engagement in social activities; (3) halting inflammation; and (4) using disease activity measures to adjust treatment.1 Included in the disease activity measures are assessments of patients' joint swelling and pain and their degree of functional impairment.
A major challenge is determining how these outcome data will be collected and by whom. This article, the fifth in a 5-part series designed to provide a practical approach to better understanding of function in RA as an essential component of treat to target management strategies, discusses the rheumatology nurse's potential role.
The first article in this series (“Understanding Function in RA: An Update on ‘Treat to Target,'” The Journal of Musculoskeletal Medicine, February 2012, page 10) provided an overview. In the second article (“Understanding Function in RA: Importance and Measurement,” The Journal of Musculoskeletal Medicine, March 2012, page 41), we first presented a standardized vocabulary for describing function, based on the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF), and then applied it to an assessment tool frequently used in rheumatology, the Health Assessment Questionnaire (HAQ).
The third article (“Understanding Function in RA: The Role of Impairments,” The Journal of Musculoskeletal Medicine, April 2012, page 78), described how impairments in body systems caused by RA can affect function and how patients can adapt their activities to cope with these impairments. In the fourth article (“Understanding Function in RA: Practical Evaluation in the Outpatient Setting,” The Journal of Musculoskeletal Medicine, May 2012, page 102), we discussed how functional assessment may be incorporated into clinical practice. This fifth article provides an overview of the nurse's role in the care of rheumatology patients, with a focus on RA.
Rheumatology nurse activities have undergone a significant evolution.
Evolution of the Nurse's Role
Rheumatology nurse activities have undergone a significant evolution since the 1980s. In the past, they consisted of limited data collection (eg, vital signs, symptoms), drug therapy monitoring, patient and staff education, and patient counseling.2 More recently, job responsibilities have been added, including in-depth patient evaluation (eg, detailed history and physical findings, review of laboratory studies), care coordination assistance, referral facilitation, patient self-management education and support, disease and treatment risk management, compliance/adherence counseling regarding the treatment regimen, and medical record (paper and electronic) documentation (Figure).2-6 However, specific nurse activities vary tremendously because of several factors, including education level, training, care experience, practice setting, geographic location, practice regulations, and the cultural context and attitudes of affiliated health care professionals.7
In addition, there is a critical shortage of trained rheumatology nurses. Although the Bureau of Labor Statistics reports 2.7 million registered nurse jobs,8 the Association of Rheumatology Health Professionals (ARHP)—the division of the American College of Rheumatology (ACR) that represents nonphysician health care professionals specializing in rheumatology—has only about 500 nurse members.9 The Rheumatology Nurses Society, a professional organization for the development and education of nurses, has about 300 members (K. Lyons, personal communication, May 9, 2012).
A position paper that details 10 recommendations for the nurse's role in the management of chronic inflammatory arthritis was published by the European League Against Rheumatism in 2011 to help determine practice, education, and research activities.7 These recommendations were developed from research evidence and expert consensus by a multidisciplinary task force of 15 nurses; a rheumatologist, an occupational therapist, a physical therapist, and a psychologist; 2 patient representatives; a research fellow; 2 conveners; and a rheumatologist/clinical epidemiologist. An extensive systematic literature review that used “nurse” and “inflammatory arthritis” as the key search terms identified only 54 studies.
Of the 10 task force recommendations, 4 had an “A” category strength of recommendation, indicating that evidence was obtained from a meta-analysis of randomized controlled trials or from at least 1 such trial in combination with expert knowledge. These recommendations called for provision of patient access to a nurse for education about the disease and its management; provision of patient access for nurse consultations to improve communication, continuity, and satisfaction with care; nurse participation in comprehensive disease management and outcome activities; and nurse assessment and intervention for psychosocial issues to reduce the risk of patients experiencing anxiety and depression.
The remaining 6 recommendations received only a “C” category strength grade. The activities for rheumatology nursing included performing telephone counseling, providing patient self-management, using care protocols and guidelines, participating in continuing education, promoting an expanded practice role for nurses, and assisting in treatment activities to control costs. Note that the “C” strength grade for these recommendations indicates mostly that the evidence was derived from descriptive studies or extrapolated from randomized controlled trials or quasi-experimental studies (a research design lacking randomization) rather than a difference of opinion among the experts.
The 10 recommendations provide a clear framework for future role development in rheumatology nursing. However, determining the specifics for implementing them is challenging because of the many factors that affect nurses' activities noted above.
Benefits of Care Delivered by Rheumatology Nurses
Although research on care provided by rheumatology nurses is limited, it has been shown that patients with RA definitely can benefit.2 Two studies of nursing interventions for patients with RA demonstrated the effectiveness of nurse-delivered patient education and counseling, drug monitoring, referrals, and assistance with adaptations for activities of daily living.10,11
Specifically, nurse-rheumatologist teams can have a positive influence on patients' knowledge, satisfaction, and pain and provide clinical outcomes (eg, improvements in quality of life and function and decreases in disease activity) as successful as those provided with usual rheumatologic care. In addition, patients who are coached to use self-management strategies are more likely to attend exercise and pain management programs, receive appropriately prescribed pharmacological therapy, and keep clinic appointments.3
Anatomy of the Office Visit
With the tremendous advances seen in medicine in recent years, the anatomy of an office visit has become increasingly complex and time-consuming. The elements in a typical visit now include the following: the patient registers and checks in; the nurse or other health care professional rooms the patient and obtains his or her chief complaint, interval history, medication review, and vital signs; the physician collects additional history, conducts a physical examination, reviews outside information, engages in discussion and joint decision making with the patient, provides documentation in the electronic or paper medical record, and creates referral communication; and the patient checks out, schedules follow-up, and pays the bill. Completing all these activities in a 15- to 30-minute session is challenging.
Although all the elements are important for achieving positive clinical outcomes and patient satisfaction, the nuances of performing them and the precise responsibility assignment for completing them successfully often is not fully defined. In the RA treat to target strategy, for example, a patient's disease activity is evaluated with clinical, laboratory, and other studies every 1 to 3 months and treatment modifications are made on the basis of these parameters. All this information must be collected, assessed, and then used for decision making after the data are discussed with the patient.
Perspectives about RA inflammatory activity may be provided by laboratory tests, including acute phase reactant and anatomical imaging studies, but the tests must be used in concert with clinical assessment of joint swelling and tenderness and the patient's functional impairment. Precisely which measure of RA disease activity to use for clinical practice was addressed recently by the ACR, which recommended the following 6 possible tools: (1) Clinical Disease Activity Index, (2) 28-joint Disease Activity Score, (3) Patient Activity Scale (PAS), (4) PAS II, (5) Routine Assessment of Patient Index Data 3 (RAPID3), and (6) Simplified Disease Activity Index.12 In a study conducted by Yazici and associates,13 the median time needed to complete a 28-joint count was 90 seconds, compared with 9.6 seconds for a multidimensional HAQ RAPID3.
Joint count challenges include both the time and expertise required to perform and record a standardized examination; with self-report measures, the obstacles are administration logistics and patient reporting variations. The nurse can be an active participant in obtaining important clinical data to assist in treat to target clinical decision making.14
Evaluation of Function
Rheumatology nurses' assessments and interventions address patients' impairments in body functions and structures, limitations in activities, and restrictions in participation. The WHO's ICF classification,15 discussed in the second article in this series, has relevance to rheumatology nurses: By understanding and using this classification as a common language, they can communicate effectively with interdisciplinary team members about patients' functional problems and treatment plans.
A recent study of 57 rheumatology nurses in 15 countries, including the United States, examined the ICF Core Set for RA from the viewpoint of nurses.16 Nearly 60% of the nurses' activities could be connected to ICF categories.
For example, the nurses reported that they manage pain in patients' upper and lower extremities, which are categories within the body functions component of the ICF. Other frequently endorsed nursing activities involved the ankles, feet, and hands, all of which are categories within the body structures component. Similarly, the nurses acknowledged that they focus on specific self-care and mobility issues in their patients, which are represented by dressing, walking, and other ICF categories.
To maximize the role that nurses in their practice can play, rheumatologists may consider encouraging them to participate in online programs offered by the ARHP, such as the Advanced Rheumatology Course (http://www.rheumatology.org/education/ProfMeetingCourses/nppa.asp) or the soon to be launched Fundamentals of Rheumatology Course (http://www.rheumatology.org/education/ProfMeetingCourses/frconlinecourse.asp). Also, educational and networking opportunities are provided at the ACR/ARHP Annual Scientific Meeting. For ARHP membership information, contact the membership department at [email protected] or (404) 633-3777 or go to http://www.rheumatology.org/membership/join/alliedhealth_info.asp.
From both the patient's and the rheumatologist's perspectives, achieving successful outcomes with RA treat to target strategies requires intensive, individualized therapy based on specific clinical, laboratory, and other data. With their educational background and clinical skills set, rheumatology nurses are well positioned to participate in the increasingly complex care management activities that are required.
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