Medical Journeys is a series of physician-reviewed clinical resources intended for both the medical team and the patients they serve. Each episode of this 12-part journey through a medical condition includes both a physician’s guide and a downloadable/printable patient resource. Medical Journeys provide physicians and patients with a step-by-step path, providing ongoing resources and support as the care team navigates the course of an illness.
A diagnosis of rheumatoid arthritis (RA) is far more than a confirmation that your joints are stiff and painful for a reason and that the future may bring some degree of disability. “The diagnosis represents a crisis for many, an altered sense of self: from perceiving themselves as a healthy person to someone who now has a chronic illness,” said Adena Batterman, LCSW, MSW, senior manager of inflammatory support and education programs Arthritis at the Hospital for Special Surgery in New York City. “Changes in relationships, work, family and social roles, the loss or reduced ability to carry out valuable activities are part of learning how to reinvent and restructure life.”
Many challenges arise in professional, parental and family life, in socialization, in connection with concerns about the course of the disease, questions about medication and side effects, and financial considerations.
“Coping with RA involves learning about this systemic disease and treatment (eg, side effects, etc.), how to live with and manage chronic unpredictable pain, severe fatigue, comorbidities, and functional limitations while navigating complex healthcare systems and Navigating insurance issues and finding a healthcare provider you trust,” Batterman said MedPage today.
“Small changes in practice can impact the lives of our patients,” she noted. “Some 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 like to be asked – and would welcome support.”
Depression: A special risk
It is well established that the prevalence of depression in patients with RA is significantly higher than in the general population and is likely due to a complex interplay 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 associated with chronic stress may also contribute.
A large longitudinal study conducted 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.
This 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 aged 40 years 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 male age group. In addition, risks were highest within 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 may be actively employed and RA is typically progressive and work limitations can negatively impact the individual and induce negative affectivity .” Additionally, “newly diagnosed patients may be psychologically vulnerable and overwhelmed by RA symptoms.”
A novel finding of the study was the discovery that the relationship between RA and depression appears to be bidirectional: people with depression had a 65% higher risk of being diagnosed with RA (HR 1.65, 95% CI 1.41-1, 77).
The authors suggested that immune system dysregulation resulting from pro-inflammatory cytokines may not only induce depression, but that the opposite may also be true: high levels of these inflammatory cytokines may also be present in mental disorders and trigger medical diseases.
In addition, the chronic pain, fatigue, and restricted physical activity associated with RA can also be symptomatic of depression, “hence, it is sometimes difficult to identify what is under-recognized or attributed to RA disease and what is under-recognized or related to clinical and sub-clinical depression.” undertreated mental health problems,” Batterman explained.
risk remission
With today’s highly effective range of medical therapies for RA, the goal of treatment is remission, or at least very low disease activity. A recent report by Belgian researchers emphasized the importance of psychosocial well-being in RA by examining the impact of patients’ 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 are now routinely included in disease outcomes and clinical trials, psychosocial well-being and disease perception have been largely overlooked despite the recognition of the importance of related stressors in disease.
Accordingly, the team performed a post-hoc analysis of the multicenter prospective CareRA study, which included 379 patients with early-stage RA who were initiating treatment with a disease-modifying anti-inflammatory drug using an aggressive treat-to-target approach.
Along with conventional measures of illness such as the Disease Activity Score in 28 Joints (DAS28) and patient and physician global assessments, psychosocial variables were measured in 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 DAS28 below 2.6; Sustained remission was defined as maintaining this score throughout weeks 16-104.
Suboptimal psychosocial well-being and negative perceptions of illness predicted a lower likelihood of sustained remission in an early RA cohort, and perceptions of illness appeared to become more clinically relevant over time, the researchers reported. In addition, about 20% of patients had poorer psychosocial outcomes despite early remission, and these patients tended to lose remission earlier.
Researchers noted that the importance of psychosocial well-being and disease perception appeared to be particularly important at disease onset, and that psychosocial factors and disease activity outcomes appeared to have complex and bidirectional influences.
Furthermore, the observation that patients with high psychosocial distress typically lost remission earlier “underscores the need to continue to pay attention to psychosocial well-being even when clinical treatment goals are being 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 address these needs.”
interventions and support
The pain, depression, and anxiety that often accompany RA have been shown to respond to different types 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 in RA patients, following the premise that “better emotional well-being leads to better self-management.”
“As a clinician who develops and promotes psychoeducational support groups for people with RA, I am an advocate of patient involvement in these types of interventions,” Batterman said. “Professionally led groups that harness 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 associated with an RA diagnosis accompanied.”
Support and education groups can also help limit the feeling of isolation that many patients experience by making them feel like they are not alone in coping with their illness. This benefit is evident even in patients who already have a strong support network of family and friends.
However, determining the optimal approach must be done on an individual basis. “It’s important to examine what approach resonates with each patient, what has worked (or not worked) in the past, and what is practical for them both geographically and financially,” Batterman said.
However, there are also several potential barriers that need to be addressed, including social determinants of health, health literacy and access to healthcare. Racial and ethnic disparities in outcomes persist and time for medical encounters is limited. ‘Here the advantage of a multidisciplinary model is obvious and should be emphasized,’ she concluded. “Psychiatric experts on the team, including clinical social workers, psychologists and psychiatrists, can provide further investigation and treatment.”
Read previous episodes of this series:
Part 1: RA Beginnings: Before the Aching Joints
Part 2: RA: Still a clinical diagnosis
Part 3: RA: Choice of first line treatment
Part 4: Case Study: Patient with RA Develops Dangerous Symptoms
Part 5: Second-Line Treatment for Rheumatoid Arthritis: What Are the Options?
Part 6: Coping with Rheumatoid Arthritis in times 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
#Psychological #emotional #health #rheumatoid #arthritis
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