“Medical Journeys” is a series of clinical resources that have been reviewed by physicians and are intended for both the medical team and the patients they serve. Each episode of this 12-part journey through a disease state includes both a physician’s guide and a downloadable/printable patient resource. “Medical Journeys” chart a path for physicians and patients every step of the way, providing continuous resources and support as the healthcare team navigates the course of a disease.
A diagnosis of rheumatoid arthritis (RA) is much more than confirmation that a person’s joints are stiff and painful 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 healthy person to someone who now has a chronic illness,” said Adena Batterman, LCSW, MSW, senior manager of the Inflammatory Arthritis Support and Education Programs at the University of Groningen. Hospital for Special Surgery in New York City. “Changes in relationships, work, family and social roles, the loss or diminished ability to perform worthwhile activities are part of learning how to reimagine and restructure life.”
Many challenges arise regarding work, parenting and family life, and socialization, along with concerns about disease progression, questions about medications and side effects, and financial considerations.
“Managing RA involves learning about this systemic disease and treatment (e.g., side effects, etc.), how to live with and manage chronic unpredictable pain, profound fatigue, comorbidities, and functional limitations, as you navigate complex health care systems. navigating insurance issues and finding a healthcare provider to trust,” 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 health care providers do not ask about mental health or emotional well-being, and yet patients report that they would like to be asked — and welcome support.”
Depression: a special risk
It is well known that the prevalence of depression is significantly higher in patients with RA than in the general population, and is likely the result of a complex interaction of processes and stress related to chronic pain, fatigue and sleep problems, as well as multiple psychosocial factors. Dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis related to chronic stress may also contribute.
A large longitudinal study in Taiwan found that the incidence of depression in RA patients was 15.69 per 1,000 patient-years, compared to 8.95 per 1,000 in non-RA patients, for a hazard ratio of 1.69 (95% CI 1.51-1.87) — an almost 70% increased risk.
That study included 8,331 RA patients and 15,456 non-RA patients, two-thirds of whom were women. The risk of depression was increased in both women and men, and was highest in patients 40 years of age and younger, with risk 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 period. age group. In addition, the risks were highest in the first 2 years after diagnosis.
Regarding the high risk in younger patients, the authors wrote: “A possible explanation for this finding is that most young RA patients can be actively employed, and RA typically progresses and work restrictions can negatively affect the individual and cause negative affectivity.” .” In addition, “newly diagnosed patients may be psychologically frail and overwhelmed by RA symptoms.”
A new finding from the study revealed that the relationship between RA and depression appeared to be bidirectional: subjects with depression had a 65% higher risk of developing RA (HR 1.65, 95% CI 1.41-1, 77).
The authors suggested that the dysregulation of the immune system due to pro-inflammatory cytokines may not only cause depression, but that the reverse may also be true: High levels of these inflammatory cytokines may also be present in mental disorders and cause medical illness.
In addition, the chronic pain, fatigue, and decreased physical activity associated with RA can also be symptomatic of depression, “so sometimes it’s difficult to sort out what can be attributed to RA disease and what can be attributed to clinical and subclinical depression, what results in under-recognized or under-treated mental health problems,” explains Batterman.
With the current highly effective array of medical therapies for RA, the goal of treatment is remission, or at least very low disease activity. A recent report by Belgian researchers highlighted the importance of psychosocial well-being on RA by examining the effects of patients’ attitudes and perceptions on their ability to maintain sustained remission from the disease. The study authors noted that while data on factors such as pain and fatigue are routinely considered in disease outcomes and clinical trials today, psychosocial well-being and illness perception are largely overlooked, despite the recognition of the importance of related stressors to illness.
Accordingly, the team conducted a post-hoc analysis of the multi-center prospective CareRA study of 379 patients with early RA who started treatment with a disease-modifying antirheumatic drug using an aggressive treatment approach.
In addition to conventional disease measures such as the Disease Activity Score in 28 joints (DAS28) and the global assessments of patients and physicians, 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 less than 2.6; sustained remission was defined as maintaining that score from 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, approximately 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 in early disease, and that psychosocial factors and outcomes of disease activity appeared to have complex and bidirectional influences.
In addition, the observation that patients with high psychosocial burdens typically lost remission earlier “underscores the need for continued attention to psychosocial well-being, even when clinical treatment goals are met,” the researchers wrote.
They concluded, “Future research should focus on strategies to identify patients with unmet psychosocial needs in a timely manner in clinical practice and on person-centred interventions to respond to these needs.”
Interventions and support
The pain, depression, and anxiety often associated with RA have been shown to respond to a variety of treatments, including cognitive behavioral therapy and mindfulness-based cognitive therapy, Batterman said. 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,” Batterman said. “Professionally-led groups, pooling 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 control the flow of emotions associated with RA.” diagnosis.”
Support and education groups can also help mitigate the sense of isolation that many patients experience, making them feel like they are not alone in coping with their illness. This benefit is visible even in patients who already have a strong support network of family and friends.
But determining the optimal approach should be individualized. “It’s important to explore what approach resonates for each patient, what has worked in the past (or not) and, practically speaking, what is accessible to them, both geographically and financially,” Batterman said.
However, there are also multiple potential barriers to address, including social determinants of health, health literacy and access to care. Racial and ethnic differences in outcomes still exist, and time is limited in the medical encounter. “This is where the benefit of a multidisciplinary model is apparent and should be emphasized,” she concluded. “Mental health professionals on the team, including clinical social workers, psychologists and psychiatrists, can further evaluate and treat.”
Read previous installments in this series:
Part 1: Onset of RA: 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