Patient and Parent Engagement May Improve Mental Health Interventions for Youth With Rheumatologic Disease

Teenage girl looking out the window
Teenage girl looking out the window
Researchers assessed patient and parent perspectives on mental health interventions for youth with rheumatologic diseases.

Self-reported mental health conditions are prevalent in youth with rheumatologic disease, and engaging patients and parents may improve mental health interventions for this patient population, according to study results published in Pediatric Rheumatology.

Previous studies have shown a high prevalence of mental health disorders in youth with rheumatologic disease. However, the involvement of patient and parents in pediatric chronic disease research is better recognized today.

In the current study, the researchers aimed to assess patient and parent perspectives on optimal mental health interventions for youth with rheumatologic disease, using a patient-engaged approach.

The study was an online, cross-sectional survey of patients with rheumatologic diseases and their families to assess youth experiences with mental health services and resources in North America. In the analysis, the researchers included patients with juvenile idiopathic arthritis (JIA), juvenile dermatomyositis (JDM), or systemic lupus erythematosus (SLE), as well as the parents of patients aged between 8 and 24 years with these diseases. Study participants provided data on past or current mental health conditions (clinician-diagnosed conditions vs self-diagnosed symptoms) and treatments received for the patients. In addition, information on the benefits of the available mental health resources was collected and text responses describing these experiences were analyzed by qualitative description. Multivariate linear regression models were used for comparison of patient and parent ratings.

The study included 123 patients and 342 parents, including 50 patients and 160 parents of patients with JIA, 43 patients and 130 parents of patients with JDM, and 30 patients and 34 parents of patients with SLE.

History of clinician- or self-diagnosed mental health conditions was reported by 75% of patients and 62% of parents of patients. The most common clinician-diagnosed mental disorders were anxiety (39%) and depression (35%), followed by adjustment disorder (23%), attention deficit disorders (18%), and suicidal thoughts (16%). The most common self-diagnosed symptoms included anxiety (27%) and depression (18%), followed by adjustment disorder (14%).

Mental health treatment was reported by 39 of 49 (80%) patients who reported a clinician-diagnosed disorder; 90 of 115 (78%) parents of patients with mental health disorders reported that the patient had received treatment. Of the 37 patients who reported self-diagnosed symptoms only, 4 (11%) reported receiving mental health treatment, with the parent-report indicating that 27 of 62 (44%) received treatment.

The level of comfort with mental health providers was assessed using a hypothetical vignette simulating a situation of emotional distress for a young patient with rheumatologic disease. After adjusting for age, sex, and disease duration, data suggested that patients were significantly less comfortable seeking help from all potential mental health providers than parents.

The top barriers to patients seeking mental health services reported by patients and parents included concerns about lack of disease understanding by mental health providers and lack of adequate insurance coverage due to high cost of mental health services. Additional common barriers reported by patients were time constraints and refusal to take medications for mental health.

Most patient and parents (69% and 63%, respectively) reported use of a patient mental health resource. The most common resource reported by patients were online informational resources; the most common resource by parent report was patient counseling services. A total of 61% and 72% of patients and parents respectively, believed that the mental health resources were helpful.

The study had several limitations, including self-reported data with potential misclassification; the inability to confirm clinical diagnoses of rheumatologic and mental health diagnoses; limited generalizability of the results to the larger pediatric rheumatology patient population; and the inability to assess pairs of patient respondents and parents from the same family due to the anonymous survey approach.

“Self-reported mental health problems are prevalent for youth in this sample with [rheumatologic] disease, and obstacles to mental health treatment include disease-related and logistic factors. Strategies are needed to improve acceptance and accessibility of mental health intervention, including routine mental health screening and availability of disease-specific mental health resources,” the researchers concluded.


Fawole OA, Reed MV, Harris JG, et al; on behalf of the CARRA Investigators. Engaging patients and parents to improve mental health intervention for youth with rheumatological disease. Pediatr Rheumatol Online J. 2021;19(1):19. doi:10.1186/s12969-021-00503-7