Pancy Brown was just 11 years when she received the life-changing diagnosis of systemic lupus erythematosus (SLE).
“You are supposed to be enjoying yourself as a “normal teen,” but instead you have to deal with flare-ups, frequent doctors’ appointments, new symptoms, and medications,” Pancy, now 21 years, wrote in an email interview.
Pancy is not alone. For children and adolescents with rheumatologic diseases, such as SLE, mental health can be one of the most difficult challenges. For example, using a national sample of Medicaid-enrolled youth with SLE, study findings indicated high rates of psychiatric illnesses, including depression, anxiety, and other illnesses, among patients with SLE.1
Given this burden, it is important for pediatric rheumatologists to consider their patients’ mental health. Pediatric rheumatologists are often the primary medical providers for their patients, and through trusting, longitudinal relationships, they are well-positioned to support their patients’ emotional wellbeing.
“I kept my SLE a secret because I didn’t want to explain to my peers what is ‘wrong’ with me,” Pancy also wrote. “It was difficult watching other people my age do normal things at the time. When I was transparent with my doctor about how I felt, I was led to the right resources, and I got the care I needed.”
Unfortunately, many barriers prevent the incorporation of mental health into rheumatologic care. These barriers range from a paucity of mental health resources to a lack of education regarding how to have effective conversations about mental health to insufficient funding to hire social workers and therapists in a subspecialty clinic setting.
Rheumatology Practices Across the US Successfully Screen for Mental Health
The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mental Health Work Group, led by pediatric rheumatologists Tamar Rubinstein, MD and Andrea Knight, MD, and child psychologist Natoshia Cunningham, PhD, aims to overcome these challenges. Several members of this workgroup have initiated innovative programs to address these barriers and improve patients’ mental health. Screening for depression has been a key focus of these efforts.
1. At the Monroe Carell Jr Children’s Hospital at Vanderbilt in Nashville, Tennessee, the pediatric rheumatology clinic is one of the first subspecialty clinics to implement routine mental health screening. Inspired by national guidelines for the care of children with type 1 diabetes, the rheumatology division has initiated depression screening for their patients, especially those with SLE.
With the intentional application of quality improvement techniques, a successful depression screening process was created for patients with SLE, using the Patient Health Questionnaire-9 modified for adolescents (PHQ-A).To optimize the sensitivity for detecting mental health issues, patients are screened at every clinic visit because symptoms of depression may fluctuate over time. According to the project lead, pediatric rheumatologist Alaina Davis, MD, the team has increased the rates of standardized depression screens for youth with SLE from 0% (September 2, 2019) to 88% (April 21, 2021).2
The success of this project has hinged on recruiting a team with diverse roles and experience, including an attending, resident, fellow, nurse care managers, clinic nurses, front desk staff, and a social worker, backed by support from their division director, clinic manager, and institutional leadership. In the future, the team is also hoping to include a patient and/or the patient’s parent’s perspective.
When screenings reveal depression, the social worker, who is shared by multiple subspecialists in the clinic, completes safety assessments and refers patients to mental health services. Before starting the screenings, the team has also created a plan with multiple layers of safety checks to ensure that a patient is not discharged from the clinic without intervention, if there is concern for suicidal ideation.
An unintended positive outcome has been the increased awareness among patients and their families regarding mental health in the setting of childhood rheumatologic disease. “The simple act of offering depression screening at every visit has… helped create a culture that ‘normalizes’ or almost ‘de-stigmatizes’ mental health issues by folding it into their routine visit,” Dr Davis wrote in an email interview. “It has served as an invitation for patients to talk about mental health issues with us… The culture change that we have seen has been an unexpected advantage of screening at every visit.”
2. The Children’s Hospital at Montefiore (CHAM), New York, where Pancy received care, started implementing routine screening for depression and anxiety, 5 years ago, for youth with SLE.
According to Dr Rubinstein, this effort began from the team’s recognition of the high comorbidity of mental health disorders with SLE. However, shortly afterward, the Division of Pediatric Rheumatology at CHAM realized that youth with other rheumatologic diseases were also affected by depression and anxiety.3 This realization led them to widen the screening protocol to include all follow-up youth aged 12 years and older.
Pancy emphasized that as an adolescent with SLE, she found the screening helpful, even when the next step in management wasn’t always readily available. “Although treatment might have long wait times, it’s still worth it to speak to your doctor about whatever issues you are having,” she wrote. “[My rheumatologists] were the doctors I saw the most and I felt comfortable talking to. I believe that the forms are helpful and can possibly save a life.”
3. The University of Minnesota has initiated a broad mental health screening program across pediatric subspecialty clinics, including rheumatology, in which all patients aged 12 and older who have not been diagnosed with depression or bipolar disorder are screened yearly for depression. The subspecialty clinics initiated this program in recognition that children with chronic diseases are at increased risk for depression.3 In addition, patients with chronic conditions often receive a majority of their care in subspecialty clinics, rather than in primary care, and therefore may miss the screenings that occur at well-child checks.
“Our goal is to identify at-risk patients and then for specialty providers to be sure they are safe and to connect them with the appropriate resources,” noted pediatric rheumatologist Danielle Bullock, MD, a leader in this initiative.
The project was initially met with some resistance from subspeciality physicians who were wary to screen for mental health due to concerns that they would not know what to do if a patient’s screen disclosed mental illness. Recognizing that it is not a subspecialist’s role to diagnose and treat mental illness, the team collaborated with mental health providers to identify appropriate next steps. They created an automatic text (“dot phrase”) in the electronic medical record that walks providers through next steps. Subspecialty clinics also share “best practices” and tips with each other, enabling interdisciplinary learning.
“We know our patients are at risk, and it is our responsibility to treat the whole patient, with mental health being a factor that could affect disease outcomes in a variety of ways,” Dr Bullock wrote in an email interview.
Pancy noted that adolescent patients may not be honest on the screening forms, particularly when their parents are in the room, as was the case for her. “I think the patients should be able to fill it out privately without their parents/guardians around so that they can feel more comfortable answering the questions,” she said.
4. At the University of North Carolina (UNC), the American Board of Pediatrics’ Roadmap Project has provided a different avenue toward supporting the mental health of children with chronic diseases. The Roadmap Project is a national effort to improve support for the emotional needs of pediatric patients with chronic conditions, and their families. At UNC, rheumatologist Aliese Sarkissian, MD, and adolescent medicine specialist Martha Perry, MD, used funding and tools provided by the Roadmap Project to complete a needs assessment at their divisions’ clinics.
The assessment identified the need for improved training of clinical staff on how to have emotional health discussions with their patients and families. The team also identified the need for improved access to resources available to support the mental health of patients and families, including resources for peer-to-peer support as well as mental health referrals for caregivers and family members.
Dr Sarkissian and colleagues implemented educational interventions for pediatricians in different roles, including at division meetings, pediatric resident lectures, and department grand rounds. For example, with the help of pediatric residents, they created videos of standardized patient simulation sessions, to demonstrate examples of effective and ineffective communication styles when discussing emotional health and wellbeing. The team also compiled lists of resources for support for patients, and their families, with specific chronic diseases and are currently developing a system for peer-to-peer connection for adolescents with chronic diseases.
“As a clinician in a subspecialty, it is often easier to focus on ‘your disease,’ but failure to acknowledge the emotional toll of chronic disease on patients and families undermines the achievable and ideal treatment success,” Dr Sarkissian wrote in an email interview. “I did not think I had time to incorporate another ‘screening’ into my clinic visits, but I learned it does not have to be perfect – it just needs to be authentic. Normalize the emotional stress, ask how they are feeling, pause to allow an answer, and then keep asking every visit. Listening is an intervention itself, so just start asking. It may be one of the most important elements of care you provide to your patients.”
Pancy agrees, emphasizing that especially given the negative impact of the COVID-19 pandemic on adolescents’ mental health, it’s more important than ever for pediatric rheumatologists to be initiating these conversations with their patients. “Open discussions [about mental health] are beneficial to the patient,” she wrote. “I believe that it is a privilege for doctors to have patients speak to them about what’s going on in their lives.”
- Knight AM, Xie M, Mandell DS. Disparities in psychiatric diagnosis and treatment for youth with systemic lupus erythematosus: analysis of a national US Medicaid sample. J Rheumatol. 2016;43(7):1427-1433. doi:10.3899/jrheum.150967
- Davis AM, Graham TB, Zhu Y, McPheeters ML. Depression and medication nonadherence in childhood-onset systemic lupus erythematosus. Lupus. 2018;27(9):1532-1541. doi:10.1177/0961203318779710
- Davis AM, Rubinstein TB, Rodriguez M, Knight AM. Mental health care for youth with rheumatologic diseases – bridging the gap. Pediatr Rheumatol. 2017;15:85. doi:10.1186/s12969-017-0214-9