Answers Sought for Mental Health Challenges in Pediatric Rheumatology Patients

Tara Haelle

April 13, 2023

NEW ORLEANS — Pediatric patients with rheumatologic diseases experience a particularly high prevalence of psychological distress and depression and anxiety symptoms, according to research presented at the Pediatric Rheumatology Symposium. Although this finding is not necessarily surprising, the extent to which depression and psychological distress impacts these young patients' quality of life has led to greater research and innovation in seeking ways to identify, address, and treat depression and anxiety in children and adolescents with diseases such as juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).

Dr Lauren Harper

Accordingly, other studies presented at the conference examined more efficient ways to screen adolescent patients for depression and assessed programs designed to improve symptoms. In fact, the American College of Rheumatology (ACR) award for the top Quality, Health Services, and Education Research abstract at this year's symposium went to Lauren Harper, MD, a pediatric rheumatology fellow at Nationwide Children's Hospital in Columbus, Ohio, whose research examined the effects of automating depression screening during check-in for adolescent patients with SLE. Her findings revealed that automation of screening increased detection of depression and suicidality, thereby increasing interventions and ultimately resulting in a reduction in depression prevalence.

"The key clinical takeaway is that mental health screening is really important — it affects our patients in so many different ways — and it's very doable in your rheumatology clinic," Harper told Medscape Medical News. "It's also important because they're coming to us very frequently, but they don't see their PCP very often, so we can't leave screening to the PCPs."

Two other studies assessed the effectiveness of a 6-week cognitive behavioral intervention for youth called Treatment and Education Approach for Childhood-Onset Lupus (TEACH). One study found that remote delivery of TEACH resulted in improved mood symptoms and reduced fatigue, and another found the program particularly effective in improving mood for patients deemed "high-risk" because of greater depression and fatigue symptoms.

The impact of growing mental health problems has been enormous both in the pediatric rheumatology population and society at large, Daria Sosna, MSc, a research coordinator at the University of Calgary in Canada, told Medscape Medical News as she visited the research posters related to psychological stress and depression.

"We need to do something," said Sosna, whose department is currently applying for funding to develop a research project to improve mental health outcomes in adolescents with lupus. "This population, specifically, has higher numbers than anyone else does because they have chronic illness" — and those issues need to be addressed, she said.

High Psychological Stress Levels

The study looking at psychological stress in pediatric rheumatology patients, led by Natalie Rosenwasser, MD, of Seattle Children's Hospital, Seattle, Washington, relied on cross-sectional data from patients enrolled in two Childhood Arthritis and Rheumatology Research Alliance (CARRA) sites, one in Utah and one in Seattle. The average age of the 71 patients who completed the surveys was 13, and the researchers reported the findings in two separate age groups: those aged 13-17, who completed the surveys themselves, and those aged 8-12, whose parents completed the surveys. Nearly all the patients (94.4%) had JIA, but one had lupus and three had juvenile dermatomyositis.

The participants completed the Patient-Reported Outcomes Measurement Information System (PROMIS) for psychological stress, physical stress, and depressive symptoms. They also filled out the NIH-Toolbox Perceived Stress survey, the 9-item Patient Health Questionnaire (PHQ-9), the Screen for Child Anxiety Related Disorders (SCARED), a visual analog scale for COVID-related distress, and a questionnaire asking about how receptive they were to mental health screening. The researchers determined that a score one standard deviation above the mean on the PROMIS and NIH-Toolbox assessments qualified as a high level of psychological stress.

"There are data that suggest that psychological stress can be a precursor to depression and anxiety, which raises the concern that not every patient who's experiencing mental health symptoms is going to be picked up on traditional measures that meet that clinical threshold, but they may really need interventions to protect their mental health," presenter Erin Treemarcki, DO, an assistant professor of pediatric rheumatology at the University of Utah in Salt Lake City, told Medscape Medical News. "Not every patient may necessarily need referral to a mental health specialist, but there are still potential interventions that we can do in the clinical setting to address mental health, which in turn can improve outcomes, including medication compliance and knowing how patients are feeling."

More than one third of the patients (39%) reported a high level of psychological stress, and 43% had elevated physical stress. Broken down by age, 26% of the teens and 15% of the younger patients reported high levels of perceived stress. The PROMIS only identified increased depressive symptoms in 26% of the participants, whereas more than half (54%) had a positive PHQ-9 depression screen. Furthermore, half the patients had SCARED scores (50%) that likely indicated anxiety disorder. Only 6% of patients reported severe stress specifically related to the pandemic, but most reported mild distress from the pandemic.

"Psychological stress was highly correlated with physical stress, perceived stress, depressive symptoms [PROMIS and PHQ-9], and anxiety," the authors reported (P < .05). The authors next plan to expand their assessment to a third CARRA site and then explore the interaction between psychological distress and sociodemographic factors.

"There's such an increase in mental health disorders right now, and we're overwhelmed in general," Sosna told Medscape Medical News after speaking with Treemarcki about her research. "There have to be interventions that approach this. We can use pharmacological approaches, we can use CBT, we can use a lot of these things that are very well established, and they're absolutely fantastic, but we don't necessarily have the resources or capabilities to do that all the time."

Benefits of Automated Depression Screening

To reduce the likelihood of depression screenings falling through the cracks during visits, Harper's study assessed the impact of automating screens in an adolescent population. In her presentation, she noted previous research finding that nearly half of youth with lupus (47%) had depression, compared with 24% of adults with lupus. Pediatric patients have nearly three times the odds of depression and more than five times the odds of suicidal ideation, she told attendees. These mood disorders are correlated with greater physical disability, higher cardiovascular risk, more disease activity, higher risk of premature death, and decreased educational attainment, medication compliance, and quality of life.

Despite recommendations for depression screening from the US Preventive Services Task Force and the American Academy of Pediatrics, only 2% of pediatric rheumatology patients are routinely screened for depression with a validated instrument, and only 7% of those with depressive symptoms are screened, according to a 2016 study that Harper cited. Yet the same study found that nearly all pediatric rheumatologists (95%) supported routine depression screening every 6-12 months. Hence her team's decision to test whether automating screening improved their screening rates.

Their population included lupus patients aged 12 and older seen at Nationwide Children's Hospital between 2014-2022. Initially, patients completed the PHQ-9 on paper, which was then transcribed into the electronic health record. The process became automated and administered on an iPad at every visit in 2022. Positive screens — those endorsing suicidality or with a score of at least 10 — caused an alert to pop up for clinicians during their workflow so that they would talk to the mental health team about the patient's needs.

A total of 149 patients completed 529 screenings during the study's 8 years. Only one patient completed a PHQ-9 in 2014, which increased to just 17 patients in 2017. Automation resulted in 225 screens (P < .01). Subsequently, positive screens increased from 0% in 2014 to 25%-30% in 2018-2021, but then fell to 12% in 2022 (P < .01). The median PHQ-9 score was 3; overall scores decreased as screening increased.

The overall incidence of positive screens during the study period was 20% and prevalence was 38%, the authors reported. Of the 10 automated alerts triggered by positive screens, 90% resulted in a meeting with a psychologist or social worker, and 90% completed a suicide risk assessment. The intrusive alert for clinicians requires them to acknowledge the alert, agreeing to initiate a risk assessment, before they can enter data into the patient's chart.

The study findings reveal "that you can successfully screen a high-risk population using an automated, seamless process, and you can alert providers without too much disruption to their typical clinic flow," Harper told attendees. "And all of these processes have led to sustainability for routine depression screening in our lupus clinic."

Harper's team next plans to expand the automated screenings to populations with other diseases, to add an automated screening for anxiety, and to explore how PHQ-9 scores correlate with disease activity, she said.

Treating Patients' Mental Health

Another two other abstracts at the symposium looked at another option, the 6-week cognitive behavioral TEACH program. Deborah Levy, MD, MS, an associate professor of pediatrics at the University of Toronto and the clinical director of rheumatology at The Hospital for Sick Children, and colleagues assessed the program's success when delivered remotely to adolescent patients with lupus. Pilot testing with TEACH had already shown improvements in fatigue and mood, Levy told attendees, but barriers to in-person delivery limited its utility even before the pandemic, so this study aimed to determine a remote version's feasibility and effects, compared with treatment as usual.

The randomized, controlled trial, led by Natoshia Cunningham, PhD, from Michigan State University, included 57 participants, aged 12-22, from seven US and Canadian rheumatology sites. All had been diagnosed with childhood-onset SLE by age 18 and had elevated symptoms in fatigue, pain, or depression. A PROMIS Fatigue T-Score of 60 or greater indicated elevated fatigue scores, whereas a high pain score was at least a 3/10 on a visual analog scale, and a high depression T-Score score was at least a 60 but not higher than 80 on the Children's Depression Inventory-2 or the Beck Depression Inventory-II (depending on the patient's age).

Patients with other chronic medical conditions, developmental delays, or untreated major psychiatric illness were excluded from the study, as were patients who were receiving overlapping treatment, such as cognitive behavioral therapy for pain or mood. Thirty patients were randomly assigned to receive treatment as usual while 27 patients were assigned to participate in the remote TEACH program.

Nearly all the patients (94%) were female, but they were racially diverse, with 42% White, 28% Asian, 19% Black, 19% Hispanic, and 4% multiracial. The patients were an average 16 years old and had been diagnosed for a median 5 years. Three of the intervention's six modules involved the caregivers or, for older patients, their partners if desired. The communication strategies taught in the program were also tailored to patients' ages.

"All of these strategies are educational, cognitive, behavioral, mindfulness strategies that target fatigue [and] pain, and they also developed web content for participants to use on their own," Levy told attendees.

The researchers had complete post-assessment data from 88% of participants, but they also reported some of the statements made during qualitative interviews about the program's feasibility.

"I think it makes people more aware of themselves to become a better version of themselves, whether that's in their normal life or in handling a lupus kind of life," one participant said about the program's benefits. Another appreciated the "alternative ways of thinking," including "being more mindful of my thoughts and how those kind of aggravate my stress."

The quantitative findings revealed a statistically significant reduction in depressive symptoms and fatigue for TEACH participants, compared with treatment as usual. Mood scores fell by an average 13.7 points in the TEACH group, compared with a drop of 2.4 points in the treatment as usual group (P < .001). Scores for fatigue fell 9.16 points in the TEACH group and 2.93 in the control group (P = .003). No statistically significant difference showed up in pain scores between the groups, although pain, medication adherence, and disease activity did improve slightly more in the TEACH group.

In addition to the significant improvements in mood and fatigue, therefore, "completion of TEACH may be associated with improved medication adherence and disease activity vs treatment as usual," Levy said.

A much smaller study authored by some of the same researchers also assessed TEACH's impact not in remote form but in terms of its value specifically for adolescent patients with SLE and elevated depression and fatigue scores. Comparison of 6 high-risk patients with 10 low-risk patients who underwent TEACH suggested that the program was especially effective for improving depression in high-risk patients since these patients had a statistically significantly greater improvement in mood. Fatigue, pain, anxiety, quality of life, and disease activity scores did not statistically differ between the groups.

Authors of the automated depression screening study reported no disclosures or outside funding. The study assessing psychological distress was funded by a CARRA-Arthritis Foundation grant, and the authors reported no disclosures. The remote TEACH study was funded by a CARRA-Arthritis Foundation grant, and all but one author reported no disclosures. One author had disclosures with Janssen, Roche, and Sobi. The high-risk TEACH study was also funded by a CARRA grant, and the authors had no disclosures.

Pediatric Rheumatology Symposium: Abstract 057. A "High-Risk" Depression/Fatigue Profile May Be Associated with Stronger Response to a Psychological Treatment for Childhood-Onset Systemic Lupus Erythematosus (cSLE). Presented March 30, 2023.

Pediatric Rheumatology Symposium: Abstract 058. High Levels of Psychological Distress, Depression, and Anxiety Symptoms in Children with Pediatric Rheumatologic Diseases. Presented March 30, 2023.

Pediatric Rheumatology Symposium: Abstract 006. Implementation of Automated Depression Screening in Patients with Lupus in a Tertiary Pediatric Rheumatology Clinic. Presented March 31, 2023.

Pediatric Rheumatology Symposium: Abstract 010. Remotely Delivered Psychological Intervention May Be Beneficial to Youth with Childhood-Onset Lupus: A Preliminary Investigation. Presented April 1, 2023.

Tara Haelle is a health/science journalist based in Dallas. Follow her at @tarahaelle

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