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"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

A diagnosis of rheumatoid arthritis (RA) is far more than an affirmation that one's joints are stiff and sore for good reason and that the future may hold some degree of disability. "The diagnosis for many represents a crisis, an altered sense of self: from seeing oneself as a well person to one who now has a chronic illness," said Adena Batterman, LCSW, MSW, senior manager of the . "Changes in relationships, work, family, and social roles, the loss or reduced ability to perform valued activities, are part of learning how to re-imagine and restructure life."

Many challenges arise regarding work life, parenting and family life, and socialization, along with concerns about disease progression, questions about medications and side effects, and financial considerations.

"Managing RA entails learning about this systemic illness and treatment (e.g., side effects, etc.), how to live with and manage chronic unpredictable pain, profound fatigue, comorbidities, and functional limitations, all while navigating complex healthcare systems and insurance issues and finding a healthcare provider one trusts," Batterman told MedPage Today.

"Small changes in practice can have an impact on our patients' lives," she noted. "A few studies have reported that the majority of healthcare providers do not ask about mental health or emotional well-being, and yet patients report that they would want to be asked -- and would welcome support."

Depression: A Particular Risk

It's been well established that the prevalence of depression is significantly higher among patients with RA than the general population, and is likely to result from a complex interaction of processes and stresses related to chronic pain, fatigue, and sleep problems, as well as multiple psychosocial factors. Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis relating to chronic stress also may contribute.

conducted in Taiwan found that the incidence of depression among RA patients was 15.69 per 1,000 patient-years compared with 8.95 per 1,000 among non-RA patients, for a hazard ratio of 1.69 (95% CI 1.51-1.87) -- a nearly 70% increased risk.

That study included 8,331 RA patients and 15,456 non-RA patients, two-thirds of whom were women. Risk of depression was elevated in both women and men, and were highest among patients ages 40 and younger, with hazard ratios of 2.14 (95% CI 1.62-2.69) for women and 2.76 (95% CI 1.83-4.59) for men in that age group. In addition, the risks were highest within the first 2 years after diagnosis.

With regard to the high risk among younger patients, the authors wrote, "A possible explanation for this finding is that most young RA subjects may be actively employed, and RA typically progresses and work restrictions may negatively affect the individual and trigger negative affectivity." In addition, "newly diagnosed patients might be psychologically fragile and overwhelmed by RA symptoms."

A novel finding of the study was its revelation that the relationship between RA and depression appeared to be bidirectional: Individuals with depression had a 65% higher risk for being diagnosed with RA (HR 1.65, 95% CI 1.41-1.77).

The authors suggested that the immune dysregulation resulting from proinflammatory cytokines may not only provoke depression, but that the reverse may also be true: high levels of these inflammatory cytokines can also be present in psychological disorders and may trigger medical illness.

Moreover, the chronic pain, fatigue, and impaired physical activity associated with RA can also be symptomatic of depression, "so sometimes it's difficult to tease out what can be attributed to RA disease and what can be attributed to clinical and subclinical depression, resulting in under-recognized or under-treated mental health issues," Batterman explained.

Risking Remission

With today's highly effective range of medical therapies for RA, the goal for treatment is remission, or at least very low disease activity. by Belgian researchers highlighted the importance of psychosocial well-being on RA by examining the effects of patient attitudes and perceptions on their ability to maintain sustained disease remission. The study authors noted that while data on factors such as pain and fatigue today are routinely considered in disease outcomes and clinical trials, psychosocial well-being and illness perception have largely been overlooked despite the recognition of the importance of related stressors on disease.

Accordingly, the team conducted a post-hoc analysis of the multicenter prospective CareRA trial that included 379 patients with early RA who were initiating treatment with a disease-modifying antirheumatic drug using an aggressive treat-to-target approach.

Along with conventional disease measures such as the Disease Activity Score in 28 joints (DAS28) and the patient and physician global assessments, psychosocial variables were measured on the Short Form (SF)-36 health survey, the Revised Illness Perception Questionnaire, and the Utrecht Coping List. These assessment tools measure many factors including emotional control, social functioning, mental health, and coping styles and strategies. Remission was defined as a DAS28 below 2.6; sustained remission was defined as maintaining that score from throughout weeks 16 to 104.

Suboptimal psychosocial well-being and negative illness perceptions predicted a lower probability of sustained remission in an early RA cohort, and illness perceptions appeared to become more clinically relevant over time, the researchers reported. In addition, about 20% of patients had worse psychosocial outcomes despite early remission, and these patients tended to lose their remission earlier.

The researchers noted that the importance of psychosocial well-being and illness perceptions appeared to be particularly important early in disease, and that psychosocial factors and disease activity outcomes appeared to have complex and bidirectional influences.

In addition, the observation that patients with high psychosocial burdens typically lost remission earlier "underlines the need for continued attention to psychosocial well-being, even when clinical treatment targets are met," the researchers wrote.

They concluded: "Future research should focus on strategies to timely identify patients with unmet psychosocial needs in clinical practice and on person-centered interventions to target these needs."

Interventions and Support

The pain, depression, and anxiety that often accompany RA have been shown to respond to various types of treatments, including cognitive behavioral therapy and mindfulness-based cognitive therapy, according to Batterman. Group interventions have been particularly helpful for goal setting and problem solving, and have been recommended by the European Alliance of Associations for Rheumatology to support self-management for RA patients, following the premise that "better emotional well-being leads to better self-management."

"As a clinician who develops and facilitates psychoeducational support groups for people with RA, I am an advocate for patient participation in these types of interventions," said Batterman. "Professionally led groups, which marshal the power of validating peer support, can help patients understand the complex nature of this systemic disease and treatments, and serve as a safe forum to process the flood of emotions which accompany an RA diagnosis."

Support and education groups also can help limit the sense of isolation many patients experience, providing them with a sense that they are not alone in managing their illness. This benefit can be seen even among patients who already have a strong support network of family and friends.

But determining the optimal approach must be individualized. "It's important to explore what approach resonates for each patient, what has worked (or not) in the past, and as a practical matter, what is accessible to them both geographically and financially," Batterman said.

However, there also are multiple potential barriers that must be addressed, including social determinants of health, health literacy, and access to care. Racial and ethnic disparities in outcomes still persist, and time is limited in the medical encounter. "This is where the benefit of a multidisciplinary model is clear and should be highlighted," she concluded. "Other healthcare professionals on the team, including social workers and nurses, can further assess and continue these discussions with patients."

Read previous installments in this series:

Part 1: RA Beginnings: Before the Painful Joints

Part 2: RA: Still a Clinical Diagnosis

Part 3: RA: Choosing Initial Treatment

Part 4: Case Study: Patient With RA Develops Dangerous Symptoms

Part 5: Second-Line Treatment of Rheumatoid Arthritis: What Are the Options?

Part 6: Managing Rheumatoid Arthritis in the Time of COVID

Part 7: Reproductive Health in Rheumatoid Arthritis

Part 8: Case Study: A Struggle to Maintain Mobility But Not for the Reason Everyone Thought