Patients & Families

Mental Health

Engaging patients and parents to improve the emotional health of youth with rheumatologic disease

Young patients with rheumatologic conditions require complex and ongoing treatment to manage their diseases. In addition to physical health challenges, issues related to emotional health such as anxiety, depression, and adjustment disorder are common. Emotional health can impact a patient's pain, fatigue, willingness to take medication, and overall quality of life. However, providers lack knowledge about how best to address emotional health problems for pediatric rheumatology patients. Research can positively impact overall care and outcomes for these young patients as well as identify emotional health needs and intervention strategies.

To examine the emotional health needs of young patients with rheumatologic disease, a survey was developed. A “patient-engaged” approach was used, involving patients and parent advisors, to develop a user-friendly survey with meaningful content for patients and their families.

Young patients (14–24 years old) with juvenile arthritis, juvenile dermatomyositis, or systemic lupus erythematous were invited to take the survey. The parents of children and young adults (8 to 24 years old) with the same diagnoses were also invited to participate. Participants answered questions about emotional health challenges, experiences with mental health treatments, and preferences regarding mental health treatment. 140 youth and 345 parents participated.

Major findings

  • Many youth had emotional health problems that had been diagnosed by a clinician:
    • 4 out of 10 young patients experienced anxiety or worry
    • 3 out of 10 young patients experienced depression or sadness
    • 2 out of 10 young patients experienced adjustment disorder
  • Additional youth had self-diagnosed symptoms were not shared with a clinician:
    • 2 out of 10 young patients experienced anxiety or worry
    • 1.5 out of 10 young patients experienced depression or sadness
    • 1 out of 10 young patients experienced adjustment difficulty
  • Youth and parents identified factors related to rheumatologic disease that most affected emotional health:
    1. Physical limitations
    2. Taking medications
    3. Dealing with disease flares
  • Young patients felt less comfortable than parents when interacting with mental health providers to address their emotional health concerns
    1. Both parents and young patients were most comfortable with rheumatologists and primary care doctors
    2. They are moderately comfortable with psychologists and psychiatrists
    3. They are least comfortable with social workers and school counselors

The survey results show that emotional health problems are common and closely tied to younger patients with rheumatologic diseases. These younger patients felt less comfortable than parents when interacting with mental health providers to address emotional health concerns; therefore, certain emotional health struggles may remain unrecognized. Both groups reported that they were most comfortable with rheumatologists and primary care doctors, moderately comfortable with psychologists and psychiatrists, and least comfortable with social workers and school counselors. Hopefully, future research can help determine the best ways to identify patients in need and to improve their interactions with mental health providers. Education may increase awareness about the emotional health of youth with rheumatologic disease among the patients themselves, their families, and their health care providers.

The survey was conducted in collaboration with the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS). The study team also included members of the Childhood Arthritis & Rheumatology Research Alliance (CARRA), the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), the Arthritis Foundation, the Cure JM Foundation, and the Lupus Foundation of America.

 

Oluwatosin Adeyemi

Andrea Knight, MD, MSCE