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92 Engaging patients and parents to improve mental health for youth with systemic lupus erythematosus
  1. Andrea M Knight1,
  2. Oluwatunmise Fawole2,
  3. Michelle Reed3,
  4. Lauren Faust4,
  5. Tamar Rubinstein5,
  6. Julia Harris6,
  7. Aimee Hersh7,
  8. Karen Onel8,
  9. Erica Lawson9,
  10. Kaveh Ardalan10,
  11. Esi Morgan11,
  12. Anne Paul11,
  13. Judith Barlin12,
  14. Paola Daly13,
  15. Mitali Dave14,
  16. Shannon Malloy14,
  17. Shari Hume14,
  18. Suzanne Schrandt15,
  19. Laura Marrow14,
  20. Angela Chapson3,
  21. Donna Napoli3,
  22. Michael Napoli3,
  23. Miranda Moyer3,
  24. Rachel Adamski3,
  25. Vincent Delgaizo16,
  26. Martha Rodriguez17 and
  27. Emily von Scheven9
  1. 1The Hospital for Sick Children, Toronto
  2. 2New York University School of Medicine
  3. 3The Children’s Hospital of Philadelphia
  4. 4Philadelphia College of Osteopathic Medicine
  5. 5Children’s Hospital at Montefiore, New York, NY, USA
  6. 6University of Missouri-Kansas City, Childrens Mercy-Kansas City, Kansas City, MO, USA
  7. 7University of Utah, Salt Lake City, UT, USA
  8. 8Hospital for Special Surgery, Weill Cornell Medicine, New York, NY, USA
  9. 9University of California San Francisco, San Francisco, CA, USA
  10. 10Lurie Childrens Hospital of Chicago, Chicago, IL, USA
  11. 11Cincinnati Childrens Hospital Medical Center, Cincinnati, OH, USA
  12. 12Lupus Foundation of America, Washington, DC, USA
  13. 13Clinical Outcome Assessments
  14. 14Cure JM
  15. 15Arthritis Foundation
  16. 16Friends of CARRA
  17. 17Riley Childrens Hospital at Indiana, Indianapolis, IN, USA


Background Mental health conditions are common in youth with systemic lupus erythematosus (SLE), yet intervention strategies are understudied. We used a patient-engaged approach to investigate the mental health needs of youth with SLE.

Methods An anonymous online survey examined beliefs and experiences with mental health for youth with SLE. Eligible youth ages 14–24 years had a diagnosis of SLE and reported specific treatment for the condition. Parents of youth 8–24 years meeting the above criteria were also eligible to participate. The survey was developed in collaboration with patient and parent advisors, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), and the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS). Participants were recruited through the Lupus Foundation of America and CARRA clinics. We tabulated youth responses for i) self-reported prevalence of mental health problems, categorized into mutually exclusive clinician-diagnosed disorders and self-diagnosed symptoms, and ii) mean Likert ratings (0=low, 4=high) for the impact of disease related-factors on their mental health. We also compared youth and parent responses using regression models to examine comfort level with potential mental health providers.

Results 102 respondents included 59 patients (58%) and 43 (42%) parents. Youth had a mean age of 20.9 (standard deviation, SD=3.4) years, and mean disease duration of 6.9 (SD 4.0) years. History of a mental health problem was reported by 21 youth (36%), of which 66% said that their rheumatologist was unaware. Clinician-diagnosed anxiety was reported by 19%, depression by 12%, and adjustment disorders by 19%; another 17%, 8% and 10% had self-reported symptoms of these disorders, respectively. Mean Likert ratings by youth indicated that disease aspects most impacting mental health were worry about disease impact on the future at 3.0 (SD 1.2), worry about having a flare at 2.9 (1.2), and worry about medication side effects at 2.8 (1.3). Youth and parents felt most comfortable discussing mental health concerns with rheumatologists and primary care providers, and least comfortable with social workers and school counselors (figure 1).

Abstract 92 Figure 1

Comparison of level of comfort with potential mental health providers among youth patients with SLE and parents. Results are shown for linear regression models comparing Likert scores among youth patients and parents, adjusted for disease duration and patient/parent-reported visual assessment score for disease-related health. *=p<0.05, **=p<0.01, ***=p<0.001

Conclusions Youth with SLE have high rates of diagnosed and undiagnosed mental health problems, which are impacted by their disease. Mental health intervention strategies in rheumatology settings may improve mental health education, screening and treatment for these youth.

Funding Source(s): The Childhood Arthritis and Rheumatology Research Alliance

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