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Rheumatoid Arthritis: Coping with Disability
This article explains the components of disability as related to rheumatoid arthritis (RA) using an expansion of Nagi's Model of Disability (Jette, 2006) and the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF). In addition, suggestions for ways in which nurses can offer patients choices in physical functional therapy and psychosocial aspects of coping with the chronicity of RA are discussed. Understanding how RA relates to the holistic management of the patient will allow nurses to modify and suggest additional measures to enhance the outcomes of patient-centered care. Many degrees of disability exist that affect the physical and psychosocial domains of RA. Nurses should identify the primary issues influencing disability and assemble supporting resources or a multidisciplinary team to manage a person's disabilities. As nurses develop and maintain relationships with patients, they are able to follow through with the care plan continuum and recognize when modifications are needed.
Rheumatoid arthritis (RA) is a chronic disease characterized by inflammation of the lining, or synovium, of the joints. It can lead to long-term joint damage, resulting in chronic pain, loss of function, and disability (Arthritis Foundation, 2008). Felson and colleagues (1993) note that initial levels of physical function in RA (i.e., physician's global disease assessment, duration of morning stiffness, grip strength, tender joint count) were significant predictors of physical disabilities in RA patients. A variety of physical-support mechanisms such as aquatic therapy, tai chi, yoga, and acupuncture are available to patients to maintain physical function and prevent further injury from the effects of nonmovement. Some of these mechanisms provide a means of group support with people with similar disabilities. However, Escalante and del Rincon (1999) note that having RA can produce social and psychological consequences (in addition to physical symptoms) and that psychosocial interventions should be considered part of chronic disease management.
Patients with RA experience varying degrees of disease activity requiring a spectrum of treatments ranging from oral corticosteroids to disease-modifying antirheumatic drugs (DMARDs) or biologic agents, which typically consist of injections or intravenous therapy. Many of the more invasive treatments are expensive, require prior insurance authorization, and are dependent upon patient compliance to maintain symptom control. These agents deal with the physical aspect of the disease and constitute the primary course of treatment from a medical perspective. Using an expansion of Nagi's Model of Disability (Jette, 2006) and the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF) to explain the components of disability also helps clarify how nurses can influence patient choices in physical functional therapy and psychosocial aspects of coping with chronic disease.
The WHO has created a classification of health and health-related domains through the ICF (WHO, 2008). These domains are classified through body, individual, and societal perspectives by a list of body functions and structure as well as a list of domains of activities and participation (WHO). A list of environmental factors that may influence a person's functioning and disability (WHO) also exists. The ICF places the focus of disability on degree rather than on a causal relationship. At the same time, the ICF acknowledges the social implications of chronicity (WHO). This article will describe how social implications affect RA's severity.
Effect on Daily Life
Lütze and Archenholtz (2007) describe how RA affects daily life in terms of physical implications (i.e., the spacing of daily activities to prevent fatigue and pain), stretching of one's limits, new strategies to perform activities, loss of valuable activities, dependence). They also explain that the degree of loss affects role perception and mood, such as the extent and frequency of depression, anger, fear, hope, and insecurity (Lütze & Archenholtz). Although Lütze and Archenholtz's study shows a link between physical and psychosocial aspects and RA, the expanded Nagi Model of Disability by Verbrugge and Jette (1994) goes further to suggest that even when physical symptoms cannot be improved, psychosocial factors can be modified to improve the patient's perception of disability in relation to actual severity. It is during this interval that nurses have the ability to intervene and help patients and families modify a plan of care to improve psychosocial well-being and the perception of physical disability.
Verbrugge and Jette's (1994) expanded model also suggests examining the following lines of scientific inquiry to assess the psychosocial well-being of patients:
When nurses talk with patients and families, an opportunity exists to discover unique disabling features that can be used to create a specific plan and goals for patients' daily routines. In addition, nurses have an opportunity to determine patients' strengths and weaknesses in each of the disabling dimensions and use these findings to prepare individualized plans of care.
Coping with Treatment
Because of the severity levels and chronicity of RA, treatments are diverse and consist of an ongoing regimen, prevention of disability, and monitoring of disease activity (Vencovský & Huizinga, 2006). Typically, treatment involves medication and pain management coupled with control of symptoms and physical conditioning aimed at preventing further disability and increasing strength. Advanced research in clinical immunology and pathology has increased understanding of RA and has led to a tremendous development in available medication therapies (Hill, 1998). In addition, treatment—whether it is office visits, medication infusions, or physical or occupational therapy—can be tiresome and time consuming, affecting patients' daily routines. Nurses greatly influence patient education and coordination of care, providing awareness and managing each patient's lifestyle and treatment.
Medication management plays a large role in treating RA, and there are various ways nurses can facilitate treatment management. The American College of Rheumatology (ACR; Mikuls, Moreland, O'Dell, Turkiewicz, & Furst, 2008) classifies RA in disease stages—early (<6 months), intermediate (6–24 months), and longer disease (>24 months)—and has made treatment recommendations based in conjunction with disease severity. In this article, medication management includes DMARDs, analgesics, and corticosteroids.
Disease-Modifying Antirheumatic Drugs
DMARDs are commonly prescribed to reduce or prevent joint damage and preserve joint integrity and function (Mikuls et al., 2008). DMARDs are further divided into two classifications: nonbiologic and biologic drugs. When nonbiologic DMARDs such as methotrexate, hydroxychloroquine, or leflunomide are prescribed, it is important for nurses to educate patients about special instructions for using DMARDs, side-effect considerations, and drug-management guidelines. For example, the commonly prescribed nonbiologic DMARD methotrexate should be taken with plenty of fluids. Potential side effects can be gastrointestinal discomfort, chills, dizziness, fever, hair loss, headache, malaise, photosensitivity, liver enzyme and cell count abnormalities, rashes, dyspnea, and candida infections (Arthritis Foundation, 2008). Because medications are prescribed for the long term, it is important to educate the patient on reporting any adverse symptoms and taking an active role in treatment management. To establish and ensure safety on a regular basis, it is important to regularly monitor blood counts, liver enzymes, and baseline chest X rays. This helps establish a pattern that helps nurses advocate for patient safety and adherence to the prescribed regimen. Patients should also be made aware of complementary support mechanisms that may be beneficial to their care plan and ease disease severity.
Biologic response-modifying drugs can halt disease progression and initiate long-lasting remission (Arthritis Foundation, 2008). A biologic drug is often prescribed when other therapies have not helped disease management. They may be given in combination with other nonbiologic DMARDs, but never in combination with one another. Biologic drugs block a specific aspect of the inflammatory process and are administered by injection or through intravenous therapy. Specially trained nurses infuse and provide patient education for self-injection and symptom management. Patients taking biologics have a higher risk for infection and developing certain cancers such as lymphoma (Arthritis Foundation). In addition, biologic therapy should not be initiated in patients with active infection. Live vaccines are not to be administered while the patient is receiving treatment with biologic agents. Blood cell count levels and liver enzymes are monitored periodically to avoid serious side effects. Consideration must be taken in coordinating infusion appointments, which generally occur in the outpatient office setting. Patients may miss an entire workday and may need transportation assistance because treatments or premedication regimens can cause fatigue. The most common potential side effects of biologics are the risk for infection, blood count and liver abnormalities, and infusion reactions (occurring during or shortly after treatment) including itching, shortness of breath, chest tightness, dyspnea, hives, redness, or pain. Typically, these side effects dissipate when the drug is discontinued. Ongoing patient education and monitoring are needed to ensure optimal effect is obtained with the least amount of side effects.
Analgesics and Nonsteroidal Antiinflammatory Drugs (NSAIDs)
Pain must be addressed early on in the patient's disease to gain patients' trust and reassure them that everything will be done to control their pain (Hill, 1998). Typically, pain relief is sought using nonopioid therapy such as extra-strength acetaminophen or NSAIDs such as Motrin, naproxen, or celocoxib. Caution should be used in patients with liver abnormalities and those at a higher risk for cardiovascular disease. Liver enzyme blood levels and routine blood pressure checks should be instituted to avoid potential adverse effects. Nurses should also be aware of the potential gastrointestinal side effects and instruct patients to report these because long-term use may exacerbate these effects.
Narcotic analgesia must be used cautiously because adverse effects may be more common and serious (Hill, 1998). Generally, narcotic analgesics are not recommended on a long-term basis; instead, they should be used for painful disease flare ups. The side effects associated with the use of narcotics may include, but not are not limited to, dizziness, nausea, vomiting, constipation, drowsiness, and dependency when used long term.
Corticosteroids are either administered for the systemic treatment of inflammation or intraarticular for a specific region of inflammation such as the knee or hip. Concurrent use of DMARDs with corticosteroids may be used when DMARDs alone do not control RA disease and symptoms. Patients may be given corticosteroids boosts via a medrol dose pack when the disease flares. Special caution is used in long-term usage because of the following potential side-effects: hypertension, edema, gastritis, indigestion, nausea, vomiting, hyperglycemia, osteoporosis, hyperlipidemia, depression, as well as other mental disturbances. Routine bone-density monitoring, laboratory monitoring of glucose and lipid levels, and patient reporting of ongoing side effects are needed to ensure patients do not develop serious irreversible implications.
Each patient with RA may experience a variety of side effects related to the various drugs and combinations prescribed. An important aspect of care that nurses are responsible for is the continuous reconciliation of medication lists, including nonprescription drugs, to prevent duplications and interactions. In addition, condition changes and adverse effects must be reported to the physician and documented for future follow up. Laboratory values, bone density scans, and patient assessment are consistently monitored and tracked to avoid serious culminating effects. Adequate patient interviewing with documentation provides an essential tool for successful disease management. Patient-sensitive approaches to coverage are used to promote compliance.
Initiating the Conversation
There is a common misconception among nurses and healthcare professionals that initiating conversations about coping with disease with chronically ill individuals will lead to a long and sorrowful discussion about how the disability affects every aspect of patients' lives. However, trained nurses can initiate an open-ended conversation that helps address primary issues while reassuring the patient that this does not have to be a one-time occurrence. Nurses gain trust by listening and identifying patients' most common difficulties. It is also helpful for nurses to restate patients' difficulties to verify what they expressed. An example of restatement is, “Mr. Smith, I understand that food preparation, transportation, and laundry are the most bothersome tasks that affect your rheumatoid arthritis. Is that so?” He may reply, “Yes, they are, but mostly I am depressed that there is no way I can seem to get these done.” As a result of this conversation, the nurse understands that although the physical factors are a problem for Mr. Smith, his depression and sense of hopelessness confound his ability to deal with these issues in the most effective manner.
Depending on the presentation of the patient and his or her complexities, the nurse and physician or qualified nurse practitioner may want to consider assembling an interdisciplinary team to address each dimension of care in detail to meet the more intricate needs. Hehir and colleagues (2008) describe the practicalities of managing the treatment of RA as medication adherence, monthly monitoring, and side effects. This practical medical management is affected by symptoms, identity, cause, timelines, and consequences of RA. Self-management is affected by the patient's personality and chosen treatment. Hehir and colleagues' model supports the need to manage symptoms, lifestyle, goal setting, pacing, work, and employment, in addition to medical treatment, which is consistent with dimensions of disability described earlier.
Nurses must be careful to not prejudge a person's level of disability. Jette (2006) concludes that two patients with very similar underlying pathology, impairments, and functional limitations may present with completely different disability profiles. Verbrugge and Jette (1994) also point out that predisposing risk factors such as sociodemographic background, lifestyle choices, biologic factors, coping skills, and external support systems affect the patient's disability and should be considered when planning his or her care. In addition, comorbid conditions must be considered when working with each patient to tailor his or her specific activity modifications. For example, two patients with similar physical dysfunction may have different coping mechanisms: One has a supportive workplace environment, while the other is declared permanently disabled and is no longer employed. It is important to assess these factors and intervene early to provide disease education and promote adaptive measures for patients so they can continue to function at the highest level.
Putting It All Together for the Patient
According to Shanahan and Smith (1999), only 40%–50% of patients with RA continue to work 10 years after diagnosis. This alarmingly high rate of unemployment indicates room for improvement in helping patients adapt to their work environments. First, nurses must advocate for closer monitoring and care of patients outside of standard single medical management. Nurses should encourage patients to make modifications to their environments at home and work to promote independence and establish the necessary healthcare measures early in the disease trajectory. Second, nurses must document the patient's progress during treatment and make any necessary modifications in a timely manner while addressing the psychosocial needs and the support systems currently in place. Patient- and family-centered education must accompany multidisciplinary support to maintain a cohesive care plan. Finally, establishing relationships with patients and families allows nurses to exchange beneficial information, help adapt the environment to meet patients' needs, and provide for patients' psychosocial needs.
The Healthcare Continuum
Nurses must ensure follow up and reassessment of the patient with RA. Hehir and colleagues (2008) suggest that patients cope more effectively with RA if participating in self-management programs and specialized clinics; however, they acknowledge that because few of these programs exist, it may not be feasible for every patient to be involved. Nurses should promote beneficial interventions based on what they believe will help each patient cope and adapt to disease progression. For example, some centers have initiated group visits for patients with chronic diseases such as RA. Group visits allow a cohort of patients with similar problems and circumstances to meet and learn from one another. This also allows nurses to ensure patients have the opportunity to voice their questions and concerns.
There are many degrees of disability affecting the physical and psychosocial domains of RA. Nurses should identify the primary issues influencing disability and assemble supporting resources or a multidisciplinary team to manage patients' disabilities. To achieve the optimal level of function, nurses should develop and maintain relationships with patients to help them sustain care plans and recognize when modifications are needed.
About the Authors
Tara L. Barker, MSN RN CCRP, is a research nurse coordinator of the Department of Rheumatologic and Immunologic Diseases at the Cleveland Clinic Foundation in Cleveland, OH. Address correspondence to her at firstname.lastname@example.org.
Theresa L. Puckett, PhD(c) RN CPNP CNE, is an assistant professor of nursing at Cleveland State University in Cleveland, OH.
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