How Living With Childhood-Onset Lupus Impacts Mental Health Save

What We Know and Where We Are Going

Children, teens, and young adults living with childhood-onset systemic lupus erythematosus (cSLE) require intense immunosuppressive treatments to prevent serious organ damage. In recent years, greater attention has been paid to the mental health burden experienced by people living with cSLE.  By the mid-2010’s, multiple studies were published that showed high rates of depression, anxiety, and suicidal thoughts among children and youth with cSLE. Importantly, young adults who were diagnosed with lupus in childhood were more likely than young adults with adult-onset lupus to experience major depression episodes, with a higher risk of recurrent episodes of depression well into adulthood. The majority of pediatric rheumatologists recognized the need for mental health screening, but by 2016 only 2% were actively screening for depression, anxiety, or other mental health needs as part of routine care due to barriers such as lack of time, personnel, and resources. Importantly, patients with cSLE and their parents also endorsed the need for greater attention to mental health needs and access to evidence-based care, but access barriers often kept such resources out of reach.

Developing an Agenda for Mental Health Research in Pediatric Rheumatology:

Recognizing the inadequate state of mental health care for children, teens, and young adults with cSLE, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health workgroup published a prioritized agenda for research addressing mental health needs in patients with pediatric rheumatic diseases including cSLE. Members of the CARRA Mental Health workgroup identified five major areas of study including: 1) mental health burdens and their relationship to pediatric rheumatologic disease, 2) the impact of mental health conditions on patient outcomes, 3) mental health awareness and education, 4) mental health screening, 5) and mental health treatment for children and youth with cSLE and other pediatric rheumatic diseases.  Within each of these areas, CARRA Mental Health workgroup members determined specific research topics and ranked them in terms of importance, feasibility, and actionability. The most feasible and actionable topics were most often related to mental health screening, while the most important topics were the relationship of mental health burden to pediatric rheumatologic disease features (e.g. disease activity) and the impact of mental health burden on outcomes.  Since the CARRA Mental Health Workgroup published this research agenda, pediatric rheumatologists have used it as a road map to conduct many studies addressing the mental health needs of patients with cSLE and other pediatric rheumatic diseases. 

Researchers Address Unmet Mental Health Needs of Children and Youth with cSLE

Since the CARRA Mental Health Workgroup published the prioritized research agenda, new studies have addressed areas of unmet need. Multiple studies have shown that routine mental health screening is feasible and identifies patients with cSLE whose mental health needs would otherwise go unrecognized. Having demonstrated the value of mental health screening for patients with cSLE, subsequent studies used quality improvement methods to increase rates of mental health screening using validated surveys and facilitate referral for mental health care when needed.

Researchers have also confirmed that mental health challenges among children and youth with cSLE have real-world consequences for disease management and outcomes. Several studies report that patients with cSLE with depression or anxiety are less likely to take their lupus medications, potentially increasing their risk of flares. Other studies show that cSLE patients with greater mental health burdens have more medical encounters (e.g., emergency department visits) and worse quality of life.

Recognizing the growing consensus that unmet health needs are common among children and youth with cSLE and rheumatologic diseases, the American College of Rheumatology recently published pediatric mental health guidance statements. These guidance statements codify the need for mental health screening using validated surveys in patients with pediatric rheumatic diseases, including cSLE, who are 12 years and older at least annually and more frequently when there is a history of mental health conditions, disease flare, or other high-risk periods (e.g. school change). Additional recommendations on management and referral of patients for mental health care and for mental health education in pediatric rheumatology clinics were also made in these new guidance statements. In short, the American College of Rheumatology mental health guidance statements for youth with rheumatologic conditions set a clear standard that mental health care is part of the pediatric rheumatologist’s overall scope of practice.

Looking Ahead: Opportunities to Advance Mental Health Care for Patients with cSLE

Building on the new consensus that mental health care is a central part of pediatric rheumatology practice for children and youth with cSLE and related conditions, the decade ahead will see many exciting advances in mental health research and practice. More attention is now being paid to the impact of cSLE, systemic inflammation, and immunosuppressive treatments on brain structure and neurocognitive function (e.g., memory, attention, executive function), with future studies likely to assess how these factors influence the mental health of cSLE patients. Ongoing studies will assess how psychological stress, depressive symptoms, and anxiety are associated with inflammation and long-term outcomes, such as cardiovascular health, in patients with cSLE and related diseases. Finally, clinical trials on the efficacy of cognitive-behavioral therapy and other psychosocial supports are ongoing, with an emphasis on using technological solutions such as telehealth and chatbots to ensure mental health care can reach more cSLE patients in need.

Key References:

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