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Explore This IssueApril 2015
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It’s not uncommon for patients with rheumatic disease to have mental and emotional reactions to their diagnosis and ongoing treatment. These psychological reactions can affect the patient physically in terms of disease progress, pain and overall quality of life. There are additional mental implications for the patient with regard to working with the rheumatologist to actively participate in decision making about their treatment and care.
In addition to dealing with chronic pain, which can cause significant frustration, patients with rheumatic disease frequently struggle with depression and anxiety.1 In one study of 11,704 patients with rheumatic disease, researchers identified depression in 15% of patients with rheumatoid arthritis (RA) or noninflammatory rheumatic disorders and in 34–39% of patients with systemic lupus erythematosus (SLE) and fibromyalgia.2 By comparison, 6.9% of the general U.S. population suffers from depression, according to the National Institute of Mental Health. In patients with RA, depression and anxiety have been correlated with multiple measures of disease-related pain and functional impairment, as well as social difficulties.3,4
Another study of 4,994 participants, including 3,635 patients with skin diseases (e.g., psoriasis) and 1,359 controls, identified clinical depression in 10.1% of patients vs. 4.3% of controls, clinical anxiety among 17.2% of patients vs. 11.1% of controls, and suicidal ideation among 12.7% of patients vs. 8.3% of controls.5 Psoriasis also has been linked with feelings of stigmatization, and researchers report that compared to patients with psoriasis, quality of life is further decreased in patients with psoriatic arthritis.6,7
In the rheumatologist’s office, it’s important to recognize emotional and mental responses to chronic disease. The rheumatologist can refer the patient for help and implement a multidisciplinary approach to help the patient cope. In learning to cope, the patient can see improvements in disease progression and quality of life, as well as accept responsibility for treatment and participate in decision making.
Strategies for Helping Patients Cope
As research into the mental and emotional effects of rheumatic disease expands, the need for psychological interventions in addition to rheumatologic interventions becomes increasingly apparent. For example, researchers who identified a significant link between disease-coping strategies, itch, and quality of life among 60 patients with psoriasis—particularly women and older patients—concluded that psychological interventions are warranted in this population.8
“Targeted interventions to identify and address depression and anxiety can have an important impact on outcomes,” says Theodore Fields, MD, FACP, director, Rheumatology Faculty Practice Plan and professor of Clinical Medicine, at Hospital for Special Surgery (HSS), Weill College of Medicine of Cornell University, New York. “To get better, patients with rheumatic disease need to get into an effective exercise program, find ways to keep functioning at the highest possible level and, when indicated, closely adhere to a medication program. When patients are overwhelmed, as with the new diagnosis of [RA], it is very hard to them to focus on these issues.”
One strategy for rheumatologists is to use the time during office visits to uncover the specific reasons for a patient’s anxiety or depression and to encourage them to talk about what’s on their mind.
It’s particularly important to help patients deal with psychological responses to rheumatic disease early on, and it helps to ensure the patient’s spouse or a family member is present during early meetings, according to Michael Weisman, MD, chair of the Division of Rheumatology at Cedars-Sinai Medical Center, Los Angeles. After the initial diagnosis is “a time when the conversation really needs to be completely open,” he says. Dr. Weisman uses humor and storytelling to try to put patients at ease and encourage them to be open about their concerns and to ask questions about their future and potential treatments. Keeping the conversation going during subsequent visits helps bolster patients’ confidence to talk about what’s bothering them, Dr. Weisman adds.
Another strategy is to encourage patients to attend support groups. Support groups have been shown to positively affect the lives of patients recently diagnosed with RA, according to a study at HSS.9 The Early RA Support and Education group includes monthly lectures and peer discussion groups. Lectures are given by rheumatologists, nutritionists, physical therapists, surgeons and other specialists who can each offer their specific area of expertise on the management and treatment of RA. In the discussion groups, clinical social workers and rheumatology RNs co-facilitate to focus “on the unique stresses, psychosocial and educational needs of patients newly diagnosed with RA,” explains Adena Batterman, MSW, LCSW, manager of RA Support and Education Programs, Department Social Work Programs, at HSS. Patients who attend these support groups have reported feeling more hopeful, better able to cope and more confident, and that RA doesn’t feel as disruptive to their lives.
The program at HSS “was developed in a methodical and thoughtful way to ensure that we addressed the unique emotional and educational needs of our patients,” Batterman says. The team started with a needs assessment, distributing questionnaires to patients and conducting focus groups, to identify patients’ most pressing concerns about living with a new diagnosis of RA (e.g., child care, the ability to work, fear of medication), and they conducted literature reviews to ensure the program would be evidence based.
Involving clinicians from several disciplines on the treatment team is key, Dr. Fields says. “You need a multidisciplinary approach to really bring to the patient the group of skills that are needed to deal with both educational and emotional needs.” He adds that specifically including a trained social worker on the team is important because “the social worker is trained in facilitating these groups and to gently guide discussion of patient concerns, and allow people who are quieter to be able to speak, and to run the group in an effective way. Some physicians may have the skills to do this, but it’s not something they’re trained in.”
It’s important to recognize emotional & mental responses to chronic disease. The rheumatologist can refer the patient for help & implement a multidisciplinary approach to help the patient cope.
Taking these concepts into another disease, Dr. Fields is currently investigating education and monitoring techniques in gout patients, who are notorious for poor medication adherence, he says. Ms. Batterman is a co-investigator in the gout study in view of the many psychosocial aspects of medication adherence problems, along with a nurse educator and several pharmacists.
The multidisciplinary format is supported by additional research, as well. Researchers concluded that to fully treat patients with RA and SLE, rheumatologists, psychiatrists and medical psychologists should work together to improve the clinical course and prognosis.10 And the psychosocial effects of psoriasis can be reduced if the patient attends a self-help organization or takes part in interdisciplinary patient education.6
Shared Decision Making
It has long been recognized that patients better comply with treatment when they have the right education.11 Talking through the options and providing sufficient information are important so patients can participate in making decisions about their care and overcome their fears about medications. With regard to starting therapy with disease-modifying antirheumatic drugs (DMARDs) specifically, researchers in The Netherlands noted that patients may perceive that the therapy is aggressive or harmful, or they may worry about side effects, influence on fertility or pregnancy, the length of time the medication takes to be effective, how it is administered and issues associated with long-term treatment.12
“Few patients are quite active participants by nature; most patients are not even aware of having a choice,” says Ingrid Nota, PhD student, University of Twente, Department of Psychology, Health and Technology, Enschede, The Netherlands. “Stating the decision to be made and which role the patient can have in the decision-making process (i.e., acknowledging the relevance of patient participation and supporting patients to increase their confidence/self-efficacy to fulfill that role) is the first, and maybe most important, step to take.”
Despite their fears about medications, patients have a strong desire to be educated about their options, particularly how a medication will affect their everyday life, according to Nota et al. “For rheumatologists, it is important to realize that not all patients want or are able to make the final choice for medication, but do have an opinion and preference on certain aspects of the medication,” Ms. Nota says. Critically, rheumatologists should ask the patient, “What matters to you when taking medication?” Ms. Nota explains.
Another study by Nota et al involved sending questionnaires to 894 patients with RA, psoriatic arthritis or ankylosing spondylitis, and the majority of respondents (response rate 58%) voiced a preference for shared decision making.13 Further, patients who felt involved in the choices about their treatment tended to be more satisfied with their care—even if they felt that they were involved in too many choices. Conversely, patients who were left feeling that they wanted to participate more were less satisfied with their care.
In the Know
In the end, it comes down to the fact that knowledge is empowering. The more the patient knows and understands, the more promising the outcomes. A recent study showed that higher baseline mindfulness (i.e., conscious understanding) among 201 patients with RA was significantly associated with less disability-related psychological distress at one year of follow-up.14
Another key is to help patients understand their own emotional and mental reactions to their disease, including reasons that they don’t follow the prescribed regimen. “Maybe for some it’s financial,” Dr. Fields says, “but for many it’s psychological—fear of side effects, denial, or general stress is preventing them from doing something that has a very high benefit-to-risk ratio and can help them a lot, but they’re not doing it for psychological reasons.”
Batterman adds that “addressing the psychological and psychosocial needs of the patient contributes to adherence [and] is a very important concept. That helps in the management of the disease itself, but it really contributes to quality of life by providing disease management and coping skills. And that’s really our ultimate goal.”
Kimberly J. Retzlaff is a medical journalist based in Denver.
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- Ankylosing spondylitis (AS)
- Fibromyalgia (FMS)
- Psoriatic arthritis
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- Systematic lupus erythematosus (SLE)
Hospital for Special Surgery
Informed Medical Decisions Foundation
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Patient Safety Foundation
- Ullman K. Chronic pain, the psychiatric perspective. The Rheumatologist. 2015 Jan;9(1):49–50.
- Wolfe F, Michaud K, Li T, et al. Chronic conditions and health problems in rheumatic diseases: comparisons with rheumatoid arthritis, noninflammatory rheumatic disorders, systemic lupus erythematosus, and fibromyalgia. J Rheumatol. 2010 Feb;37(2):305–315.
- Zyrianova Y, Kelly BD, Gallagher C, et al. Depression and anxiety in rheumatoid arthritis: The role of perceived social support. Ir J Med Sci. 2006 Apr–Jun;175(2):32–36.
- Dickens C, Jackson J, Tomenson B, et al. Association of depression and rheumatoid arthritis. Psychosomatics. 2003 May–Jun;44(3):209–215.
- Dalgard F, Gieler U, Tomas-Aragones L, et al. The psychological burden of skin diseases: A cross-sectional multicenter study among dermatological out-patients in 13 European countries. J Invest Dermatol. 2015 Apr;135(4):984–991.
- Schmid-Ott G, Schallmayer S, Calliess IT. Quality of life in patients with psoriasis and psoriasis arthritis with a special focus on stigmatization experience. Clin Dermatol. 2007 Nov–Dec;25(6):547–554.
- Rosen CF, Mussani F, Chandran V, Eder L, et al. Patients with psoriatic arthritis have worse quality of life than those with psoriasis alone. Rheumatology (Oxford). 2012 Mar;51(3):571–576.
- Ograczyk A, Miniszewska J, Kępska A, et al. Itch, disease coping strategies and quality of life in psoriasis patients. Postepy Dermatol Alergol. 2014 Oct;31(5):299–304.
- Measuring the impact of an early RA support and education program using a program evaluation with patient-identified outcomes. The 2014 ACR/ARHP Annual Meeting. 2014 Nov 19; Boston.
- Lisitsina TA, Vel’tishchev DIu, Krasnov VN, et al. [Clinical and pathogenetic relationships between immuno-inflammatory rheumatic diseases and psychic disorders] [Article in Russian]. Klin Med (Mosk). 2014;92(1):12–21.
- Jones E. Psychosocial aspects of rheumatic diseases. Can Fam Physician. 1990;36:991–993.
- Nota I, Drossaert CH, Taal E, et al. Patients’ considerations in the decision-making process of initiating disease-modifying anti-rheumatic drugs. Arthritis Care Res (Hoboken). 2014 Dec 10. doi: 10.1002/acr.22531. [Epub ahead of print]
- Nota I, Drossaert CH, Taal E, et al. Patient participation in decisions about disease modifying anti-rheumatic drugs: A cross-sectional survey. BMC Musculoskelet Disord. 2014 Oct 4;15:333. doi: 10.1186/1471-2474-15-333.
- Nyklíček I, Hoogwegt F, Westgeest T. Psychological distress across twelve months in patients with rheumatoid arthritis: The role of disease activity, disability, and mindfulness. J Psychosom Res. 2015 Feb; 78(2):162–167.