92 Engaging patients and parents to improve mental health for youth with systemic lupus erythematosus

Abstract

BackgroundMental health conditions are common in youth with systemic lupus erythematosus (SLE), yet intervention strategies are understudied. We used a patient-engaged approach to investigate the mental health needs of youth with SLE.MethodsAn anonymous online survey examined beliefs and experiences with mental health for youth with SLE. Eligible youth ages 14–24 years had a diagnosis of SLE and reported specific treatment for the condition. Parents of youth 8–24 years meeting the above criteria were also eligible to participate. The survey was developed in collaboration with patient and parent advisors, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS). Participants were recruited through the Lupus Foundation of America and CARRA clinics. We tabulated youth responses for i) self-reported prevalence of mental health problems, categorized into mutually exclusive clinician-diagnosed disorders and self-diagnosed symptoms, and ii) mean Likert ratings (0=low, 4=high) for the impact of disease related-factors on their mental health. We also compared youth and parent responses using regression models to examine comfort level with potential mental health providers.Results102 respondents included 59 patients (58%) and 43 (42%) parents. Youth had a mean age of 20.9 (standard deviation, SD=3.4) years, and mean disease duration of 6.9 (SD 4.0) years. History of a mental health problem was reported by 21 youth (36%), of which 66% said that their rheumatologist was unaware. Clinician-diagnosed anxiety was reported by 19%, depression by 12%, and adjustment disorders by 19%; another 17%, 8% and 10% had self-reported symptoms of these disorders, respectively. Mean Likert ratings by youth indicated that disease aspects most impacting mental health were worry about disease impact on the future at 3.0 (SD 1.2), worry about having a flare at 2.9 (1.2), and worry about medication side effects at 2.8 (1.3). Youth and parents felt most comfortable discussing mental health concerns with rheumatologists and primary care providers, and least comfortable with social workers and school counselors (figure 1).Abstract 92 Figure 1Comparison of level of comfort with potential mental health providers among youth patients with SLE and parents. Results are shown for linear regression models comparing Likert scores among youth patients and parents, adjusted for disease duration and patient/parent-reported visual assessment score for disease-related health. *=p<0.05, **=p<0.01, ***=p<0.001ConclusionsYouth with SLE have high rates of diagnosed and undiagnosed mental health problems, which are impacted by their disease. Mental health intervention strategies in rheumatology settings may improve mental health education, screening and treatment for these youth.Funding Source(s):The Childhood Arthritis and Rheumatology Research Alliance

Evaluation of depressive and anxiety symptoms in childhood-onset systemic lupus erythematosus: Frequency, course, and associated risk factors

“…First, this study demonstrates high frequency of depressive and anxiety symptoms in a cSLE population at baseline and follow-up which is consistent with prior research in cSLE populations 2,7,[12][13][14][15][16][17]32 and other pediatric rheumatic diseases such as juvenile idiopathic arthritis 33 and juvenile dermatomyositis. 17 The prevalence for depression disorder is reported in 11.2%, and 8.3% for anxiety disorder in the healthy general North American pediatric population, when diagnosed with gold standard structured interview with close age and gender matching.…”

“…[3][4][5][6][7] There are few prior studies examining the prevalence of depression and anxiety in cSLE, though those done show high prevalence with wide range from 20%-58%. 3,[7][8][9][10][11][12][13][14][15][16][17] There is also uncertainty about whether these symptoms meet diagnostic criteria given lack of standard psychiatric interview. There are conflicting data regarding the relationship between depression and anxiety symptoms, and disease outcomes such as SLE disease activity and damage.…”

Prioritized Agenda for Mental Health Research in Pediatric Rheumatology from the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup

“…Second, the representation of patients and parents was suboptimal, as their experiences with disease and as consumers of services provide essential perspectives for developing clinically meaningful and relevant research in mental health. Current and future projects of the workgroup aim for better representation and engagement of patients and families as key advisors and participants on the research team (27). Given the few members in both of these subgroups, we cannot infer whether differences in rankings reported in this study are significant or truly representative.…”