“How Are You Feeling?” Early Mental Health Intervention for Kids with Chronic Conditions Matters

“How are you feeling?”

It’s a common question kids are asked when they visit the doctor. Typically, the clinician is asking about their physical conditions, such as a stomach ache or a sore throat. But should they also be asking that question in regard to patients’ mental health? A growing behavioral health crisis among children and adolescents, where one in five youth under the age of 18 report some sort of mental health concern, suggests yes.

While this statistic speaks to the general population, the number of youth affected by behavioral health conditions is higher for certain communities and populations. For example, my colleagues at PolicyLab and Children’s Hospital of Philadelphia (CHOP) have written about how gender non-conforming youth and racially/ethnically diverse youth experience higher rates of suicide than the general population. My particular interest lies in understanding how adolescents’ physical health impacts their mental health, specifically for youth with chronic conditions such as lupus.

Children and adolescents with chronic conditions often start to show symptoms of mental health conditions early in the course of their disease, but many are not diagnosed until much later. Our research team wanted to understand an individual’s long-term risk of developing these mental health conditions. If the risk was strong, it would be reasonable to conclude that we need more efforts that address mental health and provide intervention early in the disease course for youth and young adults with SLE.

Our study, published earlier this year, looked specifically at adults with systemic lupus erythematosus’ (SLE) risk of developing mental health conditions, comparing those who had childhood-onset SLE vs adult-onset SLE. We followed more than 500 young adults with SLE for 12 years. The results were disheartening: 47 percent of adults with SLE reported major depression at least once over the 12-year period. The risk for major depression was higher for those with childhood-onset vs adult-onset disease SLE, and this was particularly true for those with recurring episodes of depression. These results provided the strong argument we needed to suggest the creation of opportunities to address mental health concerns early for youth with complex medical conditions.

Yet, as I helped outline in a previous blog post, a number of barriers prevent providers from identifying and treating these conditions early, including a shortage of pediatric mental health clinicians and poor reimbursement for mental health services. Families and clinicians may prioritize an adolescent’s physical well-being over their mental health concerns, and mental health care is often not properly integrated into traditional medical care. Weaving mental health into a medical visit — and ensuring that physicians have appropriate incentives to do so — could go a long way to improving clinical outcomes for a child’s mind and body, throughout their lifetime, as well as the public health and economic burdens associated with untreated mental health conditions.

Researchers across the country are exploring ways to do just that in primary care settings, and more recently in subspecialty care like rheumatology and endocrinology. Many adolescents with chronic conditions view their subspecialist as their primary care specialist because they visit them more frequently, and my past research has found that youth with SLE and their parents are very comfortable with their pediatric rheumatologist screening for mental health conditions.

While my research looks primarily at children with lupus, children with other chronic conditions are at a similarly high risk for developing mental health conditions after diagnosis. And considering 14.6 million youth in the United States have special health care needs, this is not a trivial issue. It’s imperative that we come to understand the incidence and severity of mental health conditions in this high-risk population if we are going to provide holistic care to these youth.

We have a long way to go in ensuring that high-quality mental health services are accessible to all children and adolescents, but it’s a vision that we should continue to strive for. Connecting with youth who we know are more prone to life-altering mental health conditions — and who are already involved with the health care system — is a good place to start. I’m hopeful that soon we can get to a place where “how are you feeling” addresses both physical and mental health conditions.