'Lack of guidance' compounds barriers to mental health care in pediatric rheumatology
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Depression, anxiety and suicide ideation are all elevated in pediatric and adolescent rheumatology populations compared with the general population, according to a presenter at ACR Convergence 2020.
“This topic is vast,” Tamar Rubinstein, MD, MS, of Albert Einstein College of Medicine, said in her presentation. This vastness is largely due to the diversity of pediatric rheumatologic disorders and the “breadth” of mental health disorders that impact not just these patients, but young people in general. Adolescence tends to be the “peak age” for anxiety, depression and other mental health comorbidities.
In addition to parsing some of these events, Rubinstein aimed to address the impact of mental health issues on actual rheumatologic outcomes and the impact of COVID-19 on all of the above.
Scope of the problem
Rubinstein estimated that anxiety, depression, suicidality and other mental health events are likely around 30% for pediatric rheumatic diseases. Juvenile idiopathic arthritis and lupus have generated the most data pertaining to mental health outcomes, but, when considering these outcomes across the spectrum of rheumatologic diseases, the actual rates are “quite nebulous,” Rubinstein said. “These rates may be as much as double or more of what the general population are.”
Contributing factors include the emotional toll of caring for and having a chronic disease, even if it is treatable and manageable, according to Rubinstein. The burdens of maintaining a long-term, daily therapeutic regimen can take a cumulative toll on a patient’s mental health.
“Even with our treatments, our patients experience significant disability and that comes with its own problems,” Rubinstein added, noting that steroids can lead to distress.
But managing the rheumatologic disease is just one piece of the puzzle. “In and of themselves, mental health disorders are worthy of being treated because of the problems they bring,” she said, noting that they can bring about functional impairment, disability and pain, and can impact disease activity parameters.
“Encouragingly, treatment of mental health disorders seems to have a positive impact on medication adherence,” Rubinstein said.
The impacts of rheumatologic disease and mental health comorbidities, then, are “bidirectional,” according to Rubinstein. Meaning, as one goes, so goes the other.
Rubinstein warned that these comorbidities “affect people more in minority communities,” offering the example of lupus. “Black youth are at high risk [for lupus], but they are the least likely to be diagnosed and treated,” she said.
Regardless of the race or ethnicity of the patient, the most important consideration, of course, is suicidality. “Around 10% to 15% of lupus patients have suicidal ideation,” Rubinstein said.
Compounded by COVID
Shifting to COVID-19, Rubenstein said that it is impossible to overstate the “enormous ramifications” of the pandemic. Issues pertaining to remote or in-person schooling, socialization, the anxiety of being infected and the tremendous loss of life are all playing on young people. “We are preparing for second pandemic of emotional distress,” she said.
The well-documented racial disparities in COVID-19 have reached pediatric and adolescent rheumatology, and are accompanied by the attendant mental health issues. Rubenstein noted an uptick in suicidality among individuals aged 10 to 24 years, “particularly among young Black girls” and “Black and Latino youth,” she said. There are “twin pandemics” of COVID-19 and racism.
With all of these issues at hand, Rubinstein called on rheumatologists to advocate for increased mental health resources for their patients. “An overwhelming number of rheumatologists think we should be screening our patients,” she said. “Many rheumatologists think we should be providing mental health care in the rheum clinic.”
The question, then, is why mental health screening and treatment rates not higher in the pediatric rheumatology setting. “There are barriers,” Rubinstein said. “There is a lack of mental health providers, and a lack of guidance. We need to make use of the wealth of tools and instruments we have to screen and treat these patients.”
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Rubinstein T. Prevalence & Impact of Mental Health Disorders for Patients with Childhood-Onset Rheumatic Disease. Presented at: ACR Convergence 2020; November 5-9, 2020 (virtual meeting).
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