<p><strong>OBJECTIVE: </strong>We aimed to develop a model of the illness experience for youth with systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD).</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, age 11 to 22 years, and their parents. We qualitatively defined key features of illness for families and distinguished profiles of youth adapting well vs poorly to SLE/MCTD. We then related these profiles to features of illness, patient-level attributes and outcomes.</p>

<p><strong>RESULTS: </strong>Experiences with SLE/MCTD grouped into five themes: managing disease, limitations, stigma, illness uncertainty and psychological coping. Youth adapting well experienced minimal challenges in these areas. Youth adapting poorly (4/16) experienced significant challenges in &gt;1 thematic area, and were older with lower socioeconomic status, quality of life and psychosocial functioning, and increased disease-related morbidity. They also described suboptimal treatment adherence, healthcare utilization and transition to adult care. These findings support a dynamic model in which illness adaptation and outcomes are shaped by patient characteristics and five central illness-related challenges.</p>

<p><strong>CONCLUSION: </strong>Further testing of our model of illness experience may help guide comprehensive and personalized care of youth with SLE/MCTD, with targeted supports for youth at risk for negative adaptation to illness and poor outcomes.</p>

<p><strong>OBJECTIVE: </strong>To identify targets for improving mental healthcare of adolescents with systemic lupus erythematosus (SLE) by assessing current practices and perceived barriers for mental health intervention by pediatric rheumatology clinicians.</p>

<p><strong>METHODS: </strong>Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed a Web-based survey assessing current mental health practices, beliefs, and barriers. We examined associations between provider characteristics and the frequency of barriers to mental health screening and treatment using multivariable linear regression.</p>

<p><strong>RESULTS: </strong>Of the 375 eligible CARRA members, 130 responded (35%) and 119 completed the survey. Fifty-two percent described identification of depression/anxiety in adolescents with SLE at their practice as inadequate, and 45% described treatment as inadequate. Seventy-seven percent stated that routine screening for depression/anxiety in pediatric rheumatology should be conducted, but only 2% routinely used a standardized instrument. Limited staff resources and time were the most frequent barriers to screening. Respondents with formal postgraduate mental health training, experience treating young adults, and practicing at sites with very accessible mental health staff, in urban locations, and in Canada reported fewer barriers to screening. Long waitlists and limited availability of mental health providers were the most frequent barriers to treatment. Male clinicians and those practicing in the Midwest and Canada reported fewer barriers to treatment.</p>

<p><strong>CONCLUSION: </strong>Pediatric rheumatology clinicians perceive a need for improved mental healthcare of adolescents with SLE. Potential strategies to overcome barriers include enhanced mental health training for pediatric rheumatologists, standardized rheumatology-based mental health practices, and better integration of medical and mental health services.</p>

<p><strong>BACKGROUND: </strong>Untreated mental health problems may result in poor outcomes for youth with systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD). We investigated perceptions, barriers and facilitators for mental healthcare of these youth.</p>

<p><strong>METHODS: </strong>We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, ages 11-22 years, and their parents. We used purposive sampling to deliberately obtain the experiences of youth screened during a previous study for depression and anxiety with the Patient Health Questionnaire 9 and the Screen for Childhood Anxiety and Related Disorders, respectively. We recruited 6 youth with previous positive screens and 10 with negative screens. We assessed interim mental health history, and qualitatively examined perceptions, barriers and facilitators for mental healthcare.</p>

<p><strong>RESULTS: </strong>Youth with a mental health history increased from 6 (38&nbsp;%) at initial screening to 9 (56&nbsp;%) at interview (mean follow-up = 2.1&nbsp;years). Youth receiving mental health treatment increased from 33 to 67&nbsp;%. Youth and parents identified rheumatologists as primary physicians and found mental health screening in rheumatology acceptable. Barriers to mental healthcare included: stigma; fear; uncertainty about getting help; parental emotional burden; minimization by doctors; and limited mental healthcare access. Facilitators included: strong clinician relationships; clinician initiative, sincerity and normalization in discussing mental health; and increased patient/family awareness of mental health issues in SLE/MCTD.</p>

<p><strong>CONCLUSION: </strong>Youth with SLE/MCTD and their parents perceive pediatric rheumatologists as a preferred source for mental health screening, guidance and referral. Interventions addressing barriers and enhancing facilitators may improve mental healthcare for youth with SLE/MCTD.</p>

<p><strong>BACKGROUND: </strong>Depression and anxiety adversely affects outcomes in systemic lupus erythematosus (SLE) and healthcare utilization is high for pediatric SLE. We aimed to characterize the prevalence of depression and anxiety in pediatric SLE, and their association with healthcare utilization.</p>

<p><strong>METHODS: </strong>We conducted a cross-sectional analysis of pediatric SLE and mixed connective tissue disease (MCTD) subjects and healthy controls aged 8&nbsp;years and above. We used the Patient Health Questionnaire 9 (PHQ-9) and the Screen for Childhood Anxiety Related Disorders (SCARED) to identify depression, suicidal ideation and anxiety symptoms, respectively. We compared symptom prevalence in SLE/MCTD and healthy subjects using logistic regression. For SLE/MCTD subjects, we calculated the rate of annual outpatient visits [rheumatology/nephrology, primary care provider (PCP) and emergency department], hospitalizations and rheumatology/nephrology telephone consultations in the preceding year. We compared these outcomes in those with and without depression and anxiety using negative binomial regression.</p>

<p><strong>RESULTS: </strong>We identified depression symptoms in 10 (20%) SLE/MCTD and 4 (8%) healthy subjects, representing a trend towards increased prevalence in unadjusted analysis (OR = 2.9, 95% CI 0.8-9.9, p = 0.09). Adjusted analysis did not show a significant difference; however, non-white race was a statistically significant independent risk factor for depression symptoms compared to white race (OR = 5.4, 95% CI 1.1-27.2, p = 0.04). We identified anxiety symptoms in 11 (22%) SLE/MCTD and 13 (26%) healthy subjects, which was not statistically different. Suicidal ideation was present in 7 (14%) SLE/MCTD and 2 (4%) healthy subjects, which was a statistically significant difference (OR = 5.4, 95% CI 1.02-28.3, p = 0.047). Of the 34% of SLE/MCTD subjects with any symptoms, only 24% had previous mental health care. Those with depression symptoms had a statistically significant lower rate of visits to the PCP (IRR = 0.38, 95% CI 0.19-0.76, p &lt; 0.001). Anxiety symptoms were not associated with the healthcare utilization outcomes.</p>

<p><strong>CONCLUSIONS: </strong>Depression and anxiety symptoms were prevalent, and suicidal ideation significantly more common in SLE/MCTD than in healthy subjects. Non-white race was an independent risk factor for depression. Despite prevalent symptoms, there were poor rates of prior mental health treatment, and less frequent PCP visits among those with depression symptoms. Further investigation of barriers to mental health care and interventional strategies for symptomatic youth with SLE/MCTD is needed.</p>

<p><strong>OBJECTIVE: </strong>To investigate differences in risk factors for depression and anxiety, such as central nervous system involvement in systemic lupus erythematosus (SLE)/mixed connective tissue disease (MCTD), by comparing youth with SLE/MCTD to peers with type 1 diabetes mellitus (T1D).</p>

<p><strong>STUDY DESIGN: </strong>We conducted a cross-sectional study of 50 outpatient pairs, ages 8&nbsp;years and above, matching subjects with SLE/MCTD and T1D by sex and age group. We screened for depression, suicidal ideation, and anxiety using the Patient Health Questionnaire-9 and the Screen for Childhood Anxiety Related Emotional Disorders, respectively. We collected parent-reported mental health treatment data. We compared prevalence and treatment rates between subjects with SLE/MCTD and T1D, and identified disease-specific risk factors using logistic regression.</p>

<p><strong>RESULTS: </strong>Depression symptoms were present in 23%, suicidal ideation in 15%, and anxiety in 27% of participants. Compared with subjects with T1D, subjects with SLE/MCTD had lower adjusted rates of depression and suicidal ideation, yet poorer rates of mental health treatment (24% vs 53%). Non-White race/ethnicity and longer disease duration were independent risk factors for depression and suicidal ideation. Depression was associated with poor disease control in both groups, and anxiety with insulin pump use in subjects with T1D.</p>

<p><strong>CONCLUSION: </strong>Depression and anxiety are high and undertreated in youth with SLE/MCTD and T1D. Focusing on risk factors such as race/ethnicity and disease duration may improve their mental health care. Further study of central nervous system and other disease-related factors may identify targets for intervention.</p>