Joan C. Rogers, PhD

 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.

 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,'” 

 February 2012, page 10) provided an overview. In the second article (“Understanding Function in RA: Importance and Measurement,” 

 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,” 

 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,” 

 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.

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.

 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).

 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.

In addition, there is a critical shortage of trained rheumatology nurses. Although the Bureau of Labor Statistics reports 2.7 million registered nurse jobs,

 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.

 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.

 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.

 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.

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.

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.

 In a study conducted by Yazici and associates,

 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.

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,

 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.

 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 

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.

 Smolen JS, Aletaha D, Bijlsma JW, et al; T2T Expert Committee. Treating rheumatoid arthritis to target: recommendations of an international task force [published corrections appear in 

 Hill J. Rheumatology nurse specialists-do we need them? 

 Brady T. Strategies to support self-management in osteoarthritis: five categories of interventions, including education. 

 Goh L, Samanta J, Samanta A. Rheumatology nurse practitioners' perceptions of their role. 

 Swanson KI, Pfenning S. The nurse practitioner's role in the management of rheumatoid arthritis.

 Juhola H, Kukkurainen ML, Suominen T. Rheumatology nurses' work-related empowerment. 

 van Eijk-Hustings Y, van Tubergen A, BostrÃ¶m C, et al; EULAR. EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. 

 Bureau of Labor Statistics, US Department of Labor. 

http://www.bls.gov/ooh/Healthcare/Registered-nurses.htm

 Antonelli MC, Starz TW. Assessing for risk and progression of osteoarthritis: the nurse's role: understanding pathophysiology, epidemiology, and risk will aid nurses who are seeking to expand their role in management.

 Hill J, Bird HA, Harmer R, et al. An evaluation of the effectiveness, safety and acceptability of a nurse practitioner in a rheumatology outpatient clinic. 

 Tijhuis GJ, Zwinderman AH, Hazes JM, et al. A randomized comparison of care proved by a clinical nurse specialist, an inpatient team, and a day patient team in rheumatoid arthritis. 

 Anderson J, Caplan L, Yazdany J, et al. Rheumatoid arthritis disease activity measures: American College of Rheumatology recommendations for use in clinical practice. 

 Yazici Y, Bergman M, Pincus T. Time to score quantitative rheumatoid arthritis measures: 28-Joint Count, Disease Activity Score, Health Assessment Questionnaire (HAQ), Multidimensional HAQ (MDHAQ), and Routine Assessment of Patient Index Data (RAPID) scores.

 van Tuyl LH, Plass AM, Lems WF, et al. Facilitating the use of COBRA combination therapy in early rheumatoid arthritis: a pilot implementation study.

 World Health Organization. International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization, 2001. 

http://www.who.int/classifications/icf/en

 Rauch A, Kirchberger I, Boldt C, et al. Does the Comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis capture nursing practice? A delphi survey. 

Articles

The current “treat to target” approach to rheumatoid arthritis incorporates an intensive, individualized management algorithm that includes an expanded role for the rheumatology nurse.

Understanding Function in RA: The Nurse's Role in Patient Evaluation

A challenge with the aggressive new care model for patients with rheumatoid arthritis has been determining which measures to use to assess disease activity and response to therapy. With an observed functional assessment based on the Multidimensional Health Assessment Questionnaire domains, both the physician and the patient can gain important insights into function during a standard office visit. The presence of impairments in strength, joint range of motion, pain, and coordination-including balance and dexterity-can affect patients’ ability to perform functional activities. This assessment allows a physician to observe the impact of these impairments on function. It may help identify patients with significant changes in function who can benefit from effective intervention. (

Treatment of patients with rheumatoid arthritis (RA) has undergone tremendous advances related to greater understanding of its pathophysiology and the introduction of effective disease-modifying medications. New management strategies for RA use “treat to target” objectives with an intensive individualized approach and evidence-based outcomes.

One challenge with this aggressive new care model has been determining which measures to use to assess disease activity and response to therapy. In the past, clinical assessment of joint swelling and tenderness, along with x-ray films and laboratory studies of acute phase reactants, formed the basis of the rheumatologist’s decision making. These tools provided perspectives about RA but offered limited information about the impact of synovitis on an individual patient’s function.

This is the fourth article 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. The first article (“

Understanding Function in RA: An Update on “Treat to Target,

, February 2012, page 10) provided an overview. In the second article (“

Understanding Function in RA: Importance and Measurement

, March 2012, page 41), we first presented a standardized vocabulary for describing function, based on the World Health Organization’s International Classification of Functioning, Disability and Health, 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

e, 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. This article discusses how functional assessment may be incorporated into clinical practice. The fifth article will describe the role of the nurse in multidisciplinary RA care.

Information about function may be obtained in the following 3 ways: (1) asking the patient to self-report, using a questionnaire; (2) asking the patient directed questions; and (3) observing the patient perform activities. In 1980, Dr James Fries and the Stanford group introduced the HAQ, which provides a patient-centered self-report outcome tool that includes functional measures.

 The Multidimensional Health Assessment Questionnaire (MDHAQ),

 developed by Dr Theodore Pincus, is a modifi­cation of the HAQ; this tool includes the 8 function domains in the HAQ-dressing and grooming, arising (Figure), walking, eating, hygiene, reach, grip, and activities. This widely used self-report tool assesses standardized pa­rameters of function. There is 1 question for each domain in the MDHAQ.

Research indicates that patient self-reports about function may have limitations.

 In addition, the clinician’s preconceived perspective of how a patient performs a particular task may be quite different from the actual performance.

With an observed functional assessment based on the MDHAQ domains, both the physician and the patient can gain important insights into function during a standard office visit. For the purpose of this assessment, the body is divided into 3 areas: upper body, trunk, and lower body. In some activities, such as turning on a faucet, the primary emphasis will be on 1 body area; other activities, such as picking up a shirt from the floor, require a combination of areas.

The presence of impairments in strength, joint range of motion, pain, and coordination-including balance and dexterity-can affect patients’ ability to perform functional activities. This assess­ment allows a physician to observe the impact of these impairments on function.

Before the evaluation, patients should complete the MDHAQ, which provides information about self-perceived performance of specific tasks. A physician, nurse, or other health care professional can perform the functional assessment in several minutes as part of the usual visit using items in a standard examination room plus a disposable cup.

To begin the assessment, the evaluator should ask the patient to sit in a straight-backed chair in an examination gown with shoes on. The examiner explains that as part of the visit, a brief functional assessment will be conducted to gain better understanding of how RA is affecting the patient’s day-to-day activities. “As part of your visit today, I want to evaluate how you perform certain basic activities. Let’s review your answers on the self-assessment form, and then you can show me how you do certain activities. If any are too difficult, or if you feel unsafe, let me know, and we can skip them.”

Patients generally become more engaged in the process when they specifically understand its purpose. Note that patients may answer “without any difficulty” to a question about an activity but actually may have a problem with it. During the examination, if patients are unable to perform an activity, ask, “What makes it difficult for you to do this?”

The first 2 activities address the domain of dressing and grooming. Begin by confirming that patients dress themselves at home and asking whether they have difficulty. You also may inquire whether they have made adaptations that make getting dressed easier, such as using a button hook tool, hook and loop fasteners, and a long-handled shoehorn.

Ask each patient to fasten 1 or 2 buttons on an article of clothing. If he or she is wearing a shirt, coat, or pants that have a button, use 1 of those buttons. If not, an extra laboratory jacket is an alternative.

Because buttoning is an in-hand manipulation activity that requires finger joint range of motion and dexterity to shift objects about, watch the patient’s hands carefully. Note that the buttons on women’s shirts are on the left and they use their left fingers to hold the button and their right fingers to open the buttonhole; men’s buttons are on the right side, and they are buttoned left over right. Either way, the patient should be able to place the button inside the hole smoothly and without repeated movements.

Also, note whether the patient shows signs of discomfort or pain. Avoid offering assistance in dressing or buttoning and other tasks so that you can make an accurate assessment of the patient’s abilities. If the patient struggles with the activity, ask how he manages at home, including whether he uses assistive devices.

Next, ask the patient to take off his shoes and put them back on. If the patient is wearing shoes that have laces, this activity should include tying them. Watch the fingers carefully-patients with RA may take more time positioning shoestrings. If the shoes do not have laces, ask the patient whether he has difficulty in tying shoes.

The knees, hips, and ankles also are involved with shoe tasks. Patients who have knee or hip swelling or range of motion abnormalities may slide their feet into shoes with or without laces rather than lift them. Observe whether the patient bends over to tie his shoes on the floor or crosses his legs and ties at waist level. Also, foot deformities may affect shoe activities and influence the patient’s preferred style of shoes.

Observing shoe activities can provide clues to patients’ difficulties with other dressing tasks that involve the lower body, such as putting on trousers and socks. Many patients with RA have developed safe, acceptable workaround strategies for dressing. If they are satisfied with their alternative and it poses no safety issues, no intervention is needed.

As part of assessment of the arising and activities domains, ask the patient to stand up from the chair. The patient should be wearing shoes, which is important for preventing slips and falls. Arising has the following 3 components: placing the feet in position, centering the body for balance, and lifting the body up. Each body area-upper, trunk, and lower-and the elements of strength, joint range of motion, pain, and coordination are part of this activity.

Watch carefully as the patient stands. Does he prepare to stand by inching toward the edge of the seat? Are his feet placed behind the edge of the chair before he moves forward and up? The knees must flex beyond 90° to facilitate moving the center of gravity of the upper body over the feet. The hip and knee extensor muscles then lift the body up. Arising often is assisted by the upper body muscles and joints, especially the shoulders, elbows, and wrists, to push the body to standing.

Other things to look for include the following: Does it take the patient more than 1 try to arise? Is the patient slow or deliberate in the process? Does he have expressions of pain or grimaces? Also, does he appear to be stable when he reaches the standing position?

Arising from a straight-back chair has components that simulate other arising activities, such as getting out of a car or a bed. Ask patients about these other activities. For example, when the patient arises from these other locations, are there issues with lower or upper extremity strength and range of motion? Can the patient twist his trunk and swing his legs to the side? How much does he use his upper extremities to pull himself up? The height of the car or bed and the depth of the car seat can affect performance-arising from higher surfaces is easier.

The next domain to be assessed is walking. Once the patient is standing, ask him to walk 5 steps and turn around and walk back. If the patient typically uses a cane or walker, ask him to use it to perform this task. Focus your attention on the patient’s lower extremities, and consider the smoothness, stability, and speed of his gait. Does he limp or favor one leg? Does he hold onto furniture and put a hand to the wall for balance? Does he exhibit signs of pain?

Now ask the patient to sit back down in the chair. Like standing, this task provides an excellent opportunity to observe the effect on functional activities of impairments in strength, joint range of motion, pain, and balance. Does the patient ease into the chair using his arms to steady himself? Does he have difficulty in bending his hips or knees? Does he fall into the seat? The components involved with sitting also have similarities with getting into a car and bed. You can take this opportunity to review these activities with the patient and note your observations.

The next activity helps you further assess dressing. Ask the patient to stand and take several steps forward. Then ask him to put on his shirt or coat. If he does not have one with him, simulate the activity. Observe the shoulders carefully-they have the greatest range of motion of any joint and are actively engaged in positioning the arms and hands when a shirt is donned, as are the elbow and wrist joints.

The next domains to be tested are hygiene and reach. Explain to the patient that you would like him to simulate washing and drying himself. Ask whether he bathes in a shower or tub and whether he stands or sits to wash and dry. Inquire how he bathes his back and front and upper and lower extremities.

Begin by asking the patient to place his hands on top of and then behind his head and simulate washing his hair. Ask him to put his hands to his shoulders, then behind his back, and then to the front.

Next, ask whether the patient can bend down to reach his knees or below. If yes, instruct him to pretend that he has a cloth and to slowly wash and dry his legs. Stand beside him and carefully watch for balance and stability, and immediately stop him if you sense that he is having difficulty.

When the patient is bent down, ask him to pretend to pick up a piece of clothing from the floor, which demonstrates reach and hand dexterity. Consider the speed and smoothness of the performance.

If the patient has limitations in bathing or reaching, ask whether he uses an adaptive device at home. If a patient can reach below his knees, to his lower back, and to his head, he probably can bathe himself and pick up clothing from the floor. You can take this opportunity to inquire about whether the patient has any issues with other personal hygiene activities.

While the patient is standing, ask him to go to the sink and turn the faucet on and off. This task helps in assessing grip. Focus attention on the distal upper body along with the shoulders, elbows, and forearms. The positioning of the fingers is particularly important in this task. Although patients with RA have joint impairments, many have developed effective adaptations to perform these kinds of daily activities.

While the patient is at the sink, ask him to fill a disposable cup from the faucet and lift it to his mouth. Do not hand him the cup; rather, ask him to pick it up from the sideboard or sink. Focus your attention on his hands and fingers. Notice how he lifts the cup. Does he grasp it with 1 or 2 hands? Are his fingers at the top or on the sides of the cup?

Patients with advanced RA may clamp the cup between their hands. Consider the speed and smoothness of the task when judging the efficiency of the performance. Does liquid spill from the cup? If the task seems manageable but awkward, ask how the patient feels about his performance. Is he satisfied? Is he embarrassed?

The disposable cup is different from other containers; the patient may report that he typically uses cups with handles. Difficulties with the faucet or cup activities may indicate other functional challenges with hand movements, such as picking up coins, opening car doors or jars, using a computer or cell phone, and writing.

The next activity includes some components of the arising and activities domains involving getting in and out of a car or bed. Begin by pulling out the step on the examination table. Ask the patient to stand facing the table and step up using the side of the table cushion or wall beside it as a simulated banister. This activity may be challenging. Immediate­ly stop the patient if safety is an issue.

As the patient steps up, first focus your attention on movement in the lower extremities, including hip and knee flexion. Which foot does the patient first place on the step? Then note whether the patient uses his arms to pull the body forward. Upper and lower extremity strength, joint range of motion, and balance are integral to stepping up and onto the examination table. Assessment of this activity also may provide perspective on how well the patient can climb stairs.

Next, have the patient turn around on the step and sit at the end of the table for the final activity, which addresses bed mobility. Direct the patient to lie down and roll onto his side. Focus your attention initially on the upper body and trunk as the patient turns. Then, as he lies down, watch for smoothness, speed, and control of motion. Does it take more than 1 attempt? Are the patient’s arms and legs used to provide the strength to push the body over? Is the effort painful? Because this activity is performed on the examination table, it may serve as a natural segue into the physical examination.

Clinical observation of patients’ performance with the use of this procedure provides the physician, other health care professionals, and patients with clues to their functional abilities, with an emphasis on personal care tasks and mobility issues. The assessment may help identify patients with significant changes in function who can benefit from effective intervention. This may mean altering medication prescriptions to better manage pain, stiffness, and inflammation, or it may mean referring the patient to an occupational therapist, the member of the health care team who specializes in the evaluation and management of function. The fifth and final article in this series will review the integrated multidisciplinary management of RA, with a focus on function.

Grigor C, Capell H, Stirling A, et al. Effect of a treatment strategy of tight control for rheumatoid arthritis (the TICORA study): a single-blind randomised controlled trial. 

 Smolen JS, Aletaha D, Bijlsma JW, et al. Treating rheumatoid arthritis to target: recommendations of an international task force [published correction appears in 

Bruce B, Fries JF. The Health Assessment Questionnaire (HAQ). 

 Pincus T, Sokka T, Kautiainen H. Further development of a physical function scale on a MDHAQ [corrected] for standard care of patients with rheumatic diseases [published correction appears in 

 Carter JD, Lodhi AB, Nagda SR, et al. Determining rheumatologists’ accuracy at assessing functional disability in rheumatoid arthritis patients using the Health Assessment Questionnaire–Disability Index. 

Observing rheumatoid arthritis patients in a systematic way allows rigorous analysis of pain and function. Learn how in this review.

Understanding Function in RA: Practical Evaluation in the Outpatient Setting

 The reasons why patients go to physicians to seek help for musculoskeletal problems, such as pain, difficulty in climbing stairs, and reduced work time, all are aspects of human function but refer to different aspects of function. In 2001, the World Health Organization published a classification to describe the health components of functioning and disability. Included is the entirety of a person's health rather than just the consequences of his or her disease. Patient self-report measures, used in conjunction with routine office visits, provide a practical and feasible way of obtaining information about functional health. The Health Assessment Questionnaire, a frequently used tool, has played a major role in broadening the perspective of chronic disease management from biomedical measurements to include measurement of functional health. (

Musculoskeletal problems are some of the main reasons why patients go to physicians or other health care professionals. The reasons for seeking help are quite variable. For example, a person may be experiencing persistent knee pain after a fall or noticing increased difficulty in walking up stairs or feeling that he or she is no longer able to work full-time because of joint symptomatology.

Although pain, difficulty in climbing stairs, and reduced work time all are aspects of human function, they refer to very different aspects of function-pain focuses on a part of the body, climbing stairs emphasizes a specific activity, and work time highlights a social role. In turn, these distinctions can have significant implications for the patient's assessment and treatment.

Variations in application of the term “function” also can prevent clear communication about functional problems among physicians and between physicians and their patients. The rheumatologist typically uses function in relation to a joint, the nurse in relation to a specific activity, and the occupational therapist in regard to a social role.

This is the second article in a 5-part series designed to provide a practical approach to better understanding of function in rheumatoid arthritis (RA). The first article (

“Understanding Function in RA: An Update on ‘Treat to Target,’”

 The Journal of Musculoskeletal Medicine, February 2012, page 10) provided an overview. In this second article, we first present 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 apply it to an assessment tool frequently used in rheumatology, the Health Assessment Questionnaire (HAQ). Upcoming articles will discuss how function is assessed in RA, how functional assessment may be incorporated into clinical practice, and the role of the nurse in multidisciplinary RA care.

In 2001, the WHO published a classification-to be used in conjunction with the International Statistical Classification of Diseases and Related Health Problems (ICD-10)-to describe the health components of functioning and disability, namely, the ICF.

 Included in the ICF is the entirety of a person's health rather than just the consequences of the disease.

The ICF classification has 2 major parts. The first part, labeled Functioning and Disability, identifies and defines various types of human function. It has 2 components, Body Functions and Structures, and Activities and Participation.

Body Functions and Structures refers to issues related to body systems, such as the joints, bones, and structures of the upper extremity. Dysfunctions in these body systems and functions, called impairments, include pain, joint contractures, and muscle weakness. In the ICD-10, impairments are the signs or symptoms of disease.

In Activities and Participation, the second component of Functioning and Disability, “activity” refers to function at the level of the person rather than a body system and relates to the performance of tasks or actions. Stair climbing, bathing, dressing (Figure), cooking, and vacuuming are examples that illustrate the wide spectrum of activities.

Dysfunctions in activities are called activity limitations. Participation relates to a person's involvement in a life situation, such as being a caregiver, student, secretary, or plumber. Dysfunctions in participation are called participation restrictions. Although there is no clear distinction between activities and participation, the latter typically involves a sequence of tasks and has a social aspect; activities may not have these features.

The second part of the ICF classification, labeled Contextual Factors, is composed of Environmental and Personal Factors. These are factors that can significantly modify functional health, which encompasses the unique characteristics of a person that are considered in management interventions.

Environmental Factors include the various physical, social, and attitudinal environments in which patients live, work, and play. Stairs, lack of handicapped parking, and colleagues who do not understand fluctuations in functional health associated with arthritis are examples of negative environmental factors; low-rise ramps, adequate handicapped parking spaces, and hiring policies that implement reasonable accommodations (as defined by the Americans with Disabilities Act) are positive environmental factors. The Environmental Factors component of the ICF directs attention to these determinants of function.

Note that Personal Factors encompass individual characteristics that are not a part of the health condition per se but may have a significant influence on it. Examples are the person's sex, age, race, and education level.

Thus, the Functioning and Disability part of the ICF provides a standardized vocabulary for designating dysfunction at the organ or organ system level (impairment), personal level (activity limitations), and societal level (participation restrictions). The Contextual Factors part includes the multitude of factors that can modify a person's health and functional ability.


The Multidimensional Health Assessment Questionnaire (MDHAQ), a simplification of the original tool, retained 8 self-care activities, including “dress yourself.”

Although management of patients' impairments (abnormalities of body functions and structures) is a key to improving health, it does not necessarily reduce activity limitations or participation restrictions. Assessing manifestations of function as described by the ICF, and then providing interventions specific for them, helps health care providers improve patients' functional health, which, in turn, can affect biological health. Patient self-report measures, used in conjunction with routine office visits, provide a practical and feasible way of obtaining information about functional health.

Many valid, reliable, and responsive self-report measures are available. The HAQ, a frequently used tool,

 was developed by Dr James Fries at the Stanford Arthritis Center in 1980. It was among the first “patient reported outcome” measures.

The HAQ has played a major role in broadening the perspective of chronic disease management from biomedical measurements to include measurement of functional health. Routine measurement of activities, and to some extent participation on the HAQ, helps define the consequences of the health condition (arthritis) and medical management on daily functions.

The HAQ Disability Index (HAQ-DI) has 20 questions in 8 categories: dressing and grooming, arising, eating, walking, hygiene, reach, grip, and activities. Each category has 2 or 3 questions. Patients rate questions on a 0 to 3 scale: 0 means without difficulty; 1, with some difficulty; 2, with much difficulty; and 3, unable to do. The most limited activity in a category determines the category score. Use of assistive devices (eg, button hook) to perform an activity is taken into consideration in the scoring.

The HAQ-DI is the average score of the 8 categories; it ranges from 0 to 3. Three additional items in the HAQ-DI query general physical ability, pain, and general health.

 modified the HAQ-DI to simplify it and to incorporate evaluation of more strenuous activities. This modification, known as the Multidimensional Health Assessment Questionnaire (MDHAQ), retained 8 items from the original HAQ-dress yourself, including tying shoelaces and doing buttons; get in and out of bed; lift a full cup or glass to mouth; walk outdoors on flat ground; wash and dry entire body; bend down to pick up clothing from the floor; turn regular faucets on and off; and get in and out of car, bus, train, or airplane.

 The 6 more advanced activity/participation items that were added are run errands and shop, climb up a flight of stairs, walk 2 miles, run or jog 2 miles, drive a car 5 miles from your home, and participate in sports as you would like.

The MDHAQ also includes 4 psychological items: depression, anxiety, sleep disturbance, and stress. The ICF would classify these items as impairments because they reflect organ system dysfunction. Separate average scores are calculated for the original HAQ activities, the advanced activities, and the psychological items; patients rate all items using the 4-point ordinal scale.

Ideal Instrument for Developing an Assessment

The emphasis on self-care activities and the inclusion of impairment items make the MDHAQ an ideal instrument for developing an assessment for the physician's office. Because participation involves activities that are community-based, such as shopping, observing these activities in the office is very difficult.

As a self-report measure, the MDHAQ has the same limitations as other self-report measures of function. First, patients are not always able to identify the presence and extent of activity limitations accurately, especially if they have not done an activity recently. Overestimating or underestimating activity limitations is common. Research suggests that the degree of disagreement between self-report and actual performance varies with the type of activity; the range is from 30% to 50%.

Second, self-report instruments indicate that an activity is difficult for the patient but not what about it causes difficulty. Patients may recognize that they have a problem but not specifically what is causing it or what could be done.

These 2 limitations suggest that assessment of activity should include observation of patients performing activities to identify what is causing the difficulty. The MDHAQ questions provide an ideal anchor for individual patient assessment in the physician's office.

The next article will describe how impairments in body systems caused by RA can affect function and how patients can adapt their activities to cope with these impairments. Methods to obtain information about patient function will be reviewed, including observations of activity performance during an office visit.

 Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. 

 Pincus T, Swearingen C, Wolfe F. Toward a multidimensional Health Assessment Questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. 

 Pincus T, Sokka T, Kautiainen H. Further development of a physical function scale on a MDHAQ [corrected] for standard care patients with rheumatic diseases [published correction appears in 

 Rogers JC, Holm MB, Beach S, et al. Concordance of four methods of disability assessment using performance in the home as the criterion method. 

Musculoskeletal problems are some of the main reasons why patients go to physicians or other health care professionals.

 Joint pain and joint damage resulting from rheumatoid arthritis (RA) lead to functional limitations that reduce patients’ quality of life and make activities of daily living difficult. Recent guidelines have emphasized treat to target strategies for minimizing joint destruction in patients with RA and maximizing their functional well-being, but these strategies have not been tested in usual-care settings and have not focused on the functional improvements that occur when disease activity is reduced by medication. The Routine Assessment of Patient Index Data 3, a composite of patient self-reported measures, includes a multidimensional HAQ (MDHAQ). The MDHAQ provides questions to determine patients’ ability to perform activities related to function. Additional treatment strategies that focus on directly addressing functional disabilities may be needed. (

Rheumatoid arthritis (RA), which affects an estimated 1.3 million Americans, is a complex inflammatory disorder associated with synovitis and joint destruction.

Both joint pain and joint damage resulting from RA lead to functional limitations that reduce patients’ quality of life and make activities of daily living difficult.

For example, RA is associated with significant morbidity, a reduced life span, and lost work productivity,

 and it ranks among the common chronic illnesses with the worst quality of life.

 Within 10 years of diagnosis, 35% of patients with RA will be work-disabled.

 In addition to its toll on patients’ physical and emotional health, RA is associated with losses to the US economy that were estimated at $58 billion in 2008.

New RA management strategies have “treat to target” objectives, but determining which measure to use to assess disease activity and response to therapy has been a challenge. In the past, clinical assessment of joint swelling and tenderness, along with imaging and laboratory studies, formed the basis of decision making. However, these tools offered limited information about the impact of synovitis on a patient’s function.

This is the first article in a 5-part series designed to provide a practical approach to better understanding of function in RA. An update on treat to target is offered in this introductory article. Upcoming articles will discuss the importance of function in RA, how function is assessed in RA, how functional assessment may be incorporated into clinical practice, and the role of the nurse in multidisciplinary RA care.

Treat to Target Strategies in Patients With RA

The importance of treat to target strategies for minimizing joint destruction in patients with RA and maximizing their functional well-being has been emphasized in recent guidelines from the American College of Rheumatology (ACR), the European League Against Rheumatism (EULAR), and an international task force.

 These recommendations are based on several studies that have shown improved outcomes for patients with RA based on quantitative measures of disease activity and treatment with intensive predetermined regimens of oral disease-modifying antirheumatic drugs (DMARDs) and biologic agents.

 An incentive to perform quantitative clinical disease activity measures in the routine care of patients with RA also is driven by quality of care initiatives that require quantitative measures of disease activity.

RA Disease Activity and Functional Assessments

Treat to target studies have shown that patients with RA achieve lower levels of disease activity and a better quality of life with intensive therapy and quantitative monitoring of disease activity. However, treat to target strategies have not been tested in usual-care settings and have not focused on the functional improvements that occur when disease activity is reduced by medication.

This highlights important differences between RA disease activity as measured by instruments such as the 28-joint Disease Activity Score (DAS 28) and the Clinical Disease Activity Index (CDAI) and the functional ability of patients with RA as measured by instruments such as a Health Assessment Questionnaire (HAQ) and the Routine Assessment of Patient Index Data 3 (RAPID3).

 The RAPID3 is a composite of patient self-reported measures that includes a multidimensional HAQ (MDHAQ), and the DAS 28 and CDAI are primarily physician-reported measures that rely on physician assessments of tender and swollen joints. Techniques for assessing tender and swollen joints are demonstrated in an instructional video, “Performing a Standardized Joint Count in Rheumatoid Arthritis,” and in an article.

The 2010 criteria for the diagnosis of RA established by the ACR and the EULAR were developed to promote the diagnosis of early disease.

 The original 1987 ACR criteria for a diagnosis of RA included radiographic signs that typically occur with chronic disease.

 The differences between the old and new criteria for a diagnosis of RA highlight an important distinction between reversible synovial inflammation as emphasized by the new ACR/EULAR criteria and irreversible structural joint changes that are part of the 1987 ACR criteria. With reversible inflammation of the joint, there is a greater probability that medications will lead to functional improvements. In contrast, when irreversible structural changes have occurred, occupational therapy probably is the best way to improve function for these patients with RA.

Some authors have proposed that the RAPID3 may be used as a measure of RA disease activity for targeted treatment decisions.

 In addition to the patient-reported MDHAQ functional questions, the RAPID3 is a composite score that also includes visual analog scales (VAS) of patient pain and patient global arthritis disease.

The MDHAQ consists of a set of questions that patients answer to determine their ability to perform activities related to function. Several functional domains are assessed by the MDHAQ; questions for each domain include dressing and grooming, arising, eating, walking, hygiene, grip, and reach (Figure). For example, the MDHAQ asks patients whether they have no, some, or much difficulty in getting in and out of bed. The functional domains of the MDHAQ will be demonstrated in a new video program, “A Practical Understanding of Function in Rheumatoid Arthritis” (see Box, “Video Demonstrates In-Office Assessment of Function in Patients With RA”). 

Video Demonstrates In-Office Assessment of Function in Patients With RA 

“A Practical Understanding of Function in Rheumatoid Arthritis,” a new video program, demonstrates in-office assessment of function in patients with the condition. The video provides relevant information for determining more targeted and individualized treatment and emphasizes the various roles of medications and occupational therapy in those treatment strategies.

The VAS that are part of the RAPID3 ask patients to rate their pain and arthritis disease on a scale of 0 to 10 (10 being the worst). There is a moderately good correlation between the RAPID3 and DAS 28 measures, although they have important differences. While there may be a good correlation between joint pain and swelling and a patient’s functional ability as measured by tools such as the MDHAQ, some patients with good DAS 28 scores clearly have poor scores on the RAPID3. Our own research findings suggest that among patients with RA in DAS 28 remission, as many as 40% report moderate or severe functional disabilities as assessed by the RAPID3.

The Tight Control for Rheumatoid Arthritis study, which used a treat to target strategy, and other studies have demonstrated that adjusting DMARD therapy to improve disease activity using the DAS 28 improves patient disease activity and quality of life.

 However, oral DMARDs and biologic agents probably will not improve the functional abilities of patients with RA in DAS 28 remission who also have high RAPID3 scores and chronic damage resulting from RA and other diseases. Therefore, additional treatment strategies that focus on directly addressing functional disabilities, such as evaluation and treatment by an occupational therapist, may be needed to treat patients with RA who have good DAS 28 scores but poor scores on assessments such as the RAPID3, which emphasize functional abilities.

The MDHAQ is a validated tool that provides important information for assessing the functional abilities of patients with RA. This tool can be incorporated into routine clinical practice easily and provides information that differs from that provided by quantitative disease activity measurements such as the DAS 28 and CDAI. Next in the series: a discussion of the importance of function in RA.

 Lee DM, Weinblatt ME. Rheumatoid arthritis. 

 Smolen JS, Aletaha D, Koeller M, et al. New therapies for treatment of rheumatoid arthritis. 

 Helmick CG, Felson DT, Lawrence RC, et al; National Arthritis Data Workgroup. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States, part I. 

 Wong JB, Ramey DR, Singh G. Long-term morbidity, mortality, and economics of rheumatoid arthritis. 

 Lundkvist J, Kastng F, Kobelt G. The burden of rheumatoid arthritis and access to treatment: health burden and costs. 

 Currie CJ, McEwan P, Peters JR, et al. The routine collation of health outcomes data from hospital treated subjects in the Health Outcomes Data Repository (HODaR): descriptive analysis from the first 20,000 subjects. 

Allaire S, Wolfe F, Niu J, Lavalley MP. Contemporary prevalence and incidence of work disability associated with rheumatoid arthritis in the US. 

 Saag KG, Teng GG, Patkar NM, et al; American College of Rheumatology. American College of Rheumatology 2008 recommendations for the use of nonbiologic and biologic disease-modifying antirheumatic drugs in rheumatoid arthritis. 

 Smolen JS, LandewÃ© R, Breedveld FC, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs [published correction appears in 

 Grigor C, Capell H, Stirling A, et al. Effect of a treatment strategy of tight control for rheumatoid arthritis (the TICORA study): a single-blind randomised controlled trial. 

 Goekoop-Ruiterman YP, de Vries-Bouwstra JK, Allaart CF, et al. Clinical and radiographic outcomes of four different treatment strategies in patients with early rheumatoid arthritis (the BeSt study): a randomized, controlled trial. 

 Bakker MF, Jacobs JW, Verstappen SM, Bijlsma JW. Tight control in the treatment of rheumatoid arthritis: efficacy and feasibility [published correction in 

 Verstappen SM, Jacobs JW, van der Veen MJ, et al; Utrecht Rheumatoid Arthritis Cohort Study Group. Intensive treatment with methotrexate in early rheumatoid arthritis: aiming for remission. Computer Assisted Management in Early Rheumatoid Arthritis (CAMERA, an open-label strategy trial). 

 van Tuyl LH, Lems WF, Voskuyl AE, et al. Tight control and intensified COBRA combination treatment in early rheumatoid arthritis: 90% remission in a pilot trial. 

RA ranks among the common chronic illnesses with the worst quality of life.

Author | Joan C. Rogers, PhD

Articles

Understanding Function in RA: The Nurse's Role in Patient Evaluation

Understanding Function in RA: Practical Evaluation in the Outpatient Setting

Understanding Function in RA: Importance and Measurement

Understanding Function in RA: An Update on “Treat to Target”