I have been caring for children and youth with rheumatic diseases for over 13 years in my practice in Halifax, Nova Scotia. I am now in the privileged position of having seen so many of my patients grow up before my eyes. As juvenile idiopathic arthritis (JIA) is often diagnosed when children are quite young, many of the children I met as toddlers are now teenagers and even young adults. One thing that I have found especially difficult in my practice, is seeing the onset and evolution of mental health problems in my patients.
Why do I find it so difficult? I feel sadness for my patients who are struggling, I feel helpless because the problems are beyond my area of expertise. I sense the fear in the worried parents, and I know that mental health care services can be scarce and difficult to access. I also know that the relationship between mental health and rheumatic disease is complex: which way does the relationship go? Does having a rheumatic disease lead to mental health problems? Does having a mental health disorder make your rheumatic disease worse? Does your rheumatic condition make your mental health disorder worse? Is it the chicken or the egg? (For a compelling first hand account, please check out this eloquent blog by Julie Beausoleil: Take a Pain Check - A Physical Illness with Mental Health Implications).
What we do know is that mental health disorders begin to emerge in adolescence and early adulthood whether or not someone has a rheumatic disease (1). However, we also know that adolescents with JIA have a higher rate of mental health disorders, like depression and anxiety, compared with peers without a chronic disease (2). This means that there is likely something about having a rheumatic disease that increases the risk of mental health problems.
Two years ago (pre-pandemic), I embarked on a small research project with a medical student in which we aimed to determine just how many adolescents with JIA seen in our clinic had signs of depression or anxiety. Almost every adolescent (98%) agreed to do the study which consisted of an anonymous survey called the RCADs (Revised Childhood Anxiety and Depressive Disorder Scale) and some questions about their arthritis, while their doctors also provided some information about them.
The results of this study were sobering. Forty percent of the 80 adolescents in the study scored high enough on the RCADs to indicate their symptoms were compatible with at least one mental health disorder. The most common disorder was major depressive disorder (24%) and a close second was panic disorder (23%). Social phobia was third (16%) and separation anxiety was fourth (14%). About 15% of adolescents scored highly for more than one disorder. What we found very interesting was that adolescents who rated their arthritis disease activity as worse were more likely to score in the high range on the RCADs. The physician’s rating of disease activity did not correlate with higher scores on the RCADs, however.
Fortunately, there is a big movement in rheumatology research to study the relationships between mental health and rheumatic disease (3). So hopefully we will know the answers to some of these questions in the future. But for now, what can we do as health care providers?
We need to do what we can to destigmatize mental health illness through routine screening for concomitant mental health disorders.
We need to advocate for our patients in accessing timely and appropriate mental health care.
We need to communicate with our colleagues in mental health and help educate them about rheumatic disease and vice versa – mental health and physical health do not exist in silos.
We need to view our patients through a holistic lens if we are to support them in achieving their best outcomes.
Now that there is a shimmer of light at the end of this dark, COVID-19 pandemic tunnel, it remains to be seen just how significant its impact has been on the mental health of children and youth living in these unprecedented times. What is clear, perhaps now more than ever, is that mental health must be part of the conversation.
1. Kessler RC, Amminger GP, Aguilar‐Gaxiola S, Alonso J, Lee S, Ustun TB. Age of onset of mental disorders: A review of recent literature. Curr Opin Psychiatry 2007;20:359-64.
2. Fair DC, Rodriguez M, Knight AM, Rubinstein TB. Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review. Open Access Rheumatol 2019;11:237-52.
3. Rubinstein TB, Ogbu EA, Rodriguez M, Waqar L, Woo JMP, Davis AM, et al. Prioritized Agenda for Mental Health Research in Pediatric Rheumatology from the Childhood Arthritis and Rheumatology Research Alliance Mental Health Workgroup. J Rheumatol 2020;47:1687-95.