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Abstract Number: 1432

Engaging Patients and Parents to Improve Mental Health for Youth with Rheumatologic Disease

Oluwatunmise Fawole1, Michelle Vickery2, Lauren Faust3, Tamar Rubinstein4, Julia Harris5, Aimee O. Hersh6, Karen Onel7, Erica Lawson8, Emily von Scheven9, Kaveh Ardalan10, Esi Morgan11, Anne Paul12, Judith Barlin13, R. Paola Daly13, Mitali Dave14, Shannon Malloy15, Shari Hume15, Suzanne Schrandt16, Laura C. Marrow17, Angela Chapson3, Donna Napoli3, Michael Napoli3, Miranda Moyer3, Rachel Adamski3, Vincent Del Gaizo18, Martha Rodriguez19 and Andrea M. Knight20, 1The Children's Hospital of Philadelphia, Philadelphia, PA, 2Hershey Medical Center, Hershey, PA, 3Children's Hospital of Philadelphia, Philadelphia, PA, 4Pediatric Rheumatology, Albert Einstein College of Medicine, Children's Hospital at Montefiore, Bronx, NY, 5Children's Mercy - Kansas City, Kansas City, MO, 6Pediatrics/Rheumatology, University of Utah, Salt Lake City, UT, 7Division of Pediatric Rheumatology, University of Chicago, Chicago, IL, 8Pediatrics/Rheumatology, University of California, San Francisco, San Francisco, CA, 9Pediatric Rheumatology, University of California San Francisco, San Francisco, CA, 10Division of Rheumatology; Department of Pediatrics, Ann & Robert H. Lurie Children’s Hospital of Chicago/Northwestern University Feinberg School of Medicine, Chicago, IL, 11University of Cincinnati, Cincinnati, OH, 12Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 13Lupus Foundation of America, Washington, DC, 14Cure JM Foundation, Encintas, CA, 15Cure JM Foundation, Encinitas, CA, 16Arthritis Foundation, Saint Paul, MN, 17Arthritis Foundation, Atlanta, GA, 18Parent Partner, Whitehouse Station, NJ, 19Riley Children’s Hospital at Indiana, Indianapolis, IN, 20Center for Pediatric Clinical Effectiveness & PolicyLab, Children's Hospital of Philadelphia, Philadelphia, PA

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: mental health, patient engagement and pediatric rheumatology

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Session Information

Date: Monday, October 22, 2018

Session Title: Pediatric Rheumatology – Clinical Poster II: Autoinflammatory Disorders, Scleroderma, and Miscellaneous

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: Mental health conditions are common in youth with rheumatologic disease, yet intervention strategies are understudied. We used a patient-engaged approach to investigate the mental health needs of youth with rheumatologic disease.

Methods: An anonymous online survey examined beliefs and experiences with mental health for youth with rheumatologic disease. Eligible youth ages 14-24 years had a diagnosis of juvenile arthritis, juvenile dermatomyositis, or systemic lupus erythematosus, 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 & Rheumatology Research Alliance (CARRA), and the Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS). Participants were recruited through the Arthritis Foundation, Lupus Foundation of America, and Cure JM Foundation. We compared youth and parent responses using regression models (adjusted for demographic and disease covariates) to examine: 1) reported prevalence of mental health problems, categorized into mutually exclusive clinician-diagnosed disorders and self-reported symptoms, 2) mean Likert ratings (0=low, 4=high) for the impact of disease aspects on mental health, and 3) comfort level with potential mental health providers.

Results: 485 respondents included 140 patients (29%) and 345 (71%) parents. Clinician-diagnosed anxiety was reported by 39% of youth, depression by 29%, and adjustment disorders by 19% (Figure 1); another 22%, 15% and 11% had self-reported symptoms of these disorders, respectively. Mean Likert ratings by youth indicated that disease aspects most impacting mental health were physical limitation at 2.7 (SD 1.1), taking medications at 2.6 (1.2), and dealing with disease flares at 2.5 (1.2). Adjusted models showed no difference between youth and parents for reported mental health problems or impacting factors. Youth were significantly less comfortable interacting with all potential mental health providers than parents, particularly social workers and school counselors (Figure 2); both groups felt most comfortable with rheumatologists and primary care providers.

Conclusion: Youth with rheumatologic disease have high rates of diagnosed and undiagnosed mental health problems, which are impacted by their disease. Mental health intervention in primary care and subspecialty care settings may improve mental health education, screening and treatment for these youth.


Disclosure: O. Fawole, None; M. Vickery, None; L. Faust, None; T. Rubinstein, None; J. Harris, None; A. O. Hersh, None; K. Onel, None; E. Lawson, None; E. von Scheven, None; K. Ardalan, None; E. Morgan, None; A. Paul, None; J. Barlin, None; R. P. Daly, Mallinckrodt Pharmaceuticals, 2; M. Dave, None; S. Malloy, None; S. Hume, None; S. Schrandt, None; L. C. Marrow, None; A. Chapson, None; D. Napoli, None; M. Napoli, None; M. Moyer, None; R. Adamski, None; V. Del Gaizo, None; M. Rodriguez, None; A. M. Knight, None.

To cite this abstract in AMA style:

Fawole O, Vickery M, Faust L, Rubinstein T, Harris J, Hersh AO, Onel K, Lawson E, von Scheven E, Ardalan K, Morgan E, Paul A, Barlin J, Daly RP, Dave M, Malloy S, Hume S, Schrandt S, Marrow LC, Chapson A, Napoli D, Napoli M, Moyer M, Adamski R, Del Gaizo V, Rodriguez M, Knight AM. Engaging Patients and Parents to Improve Mental Health for Youth with Rheumatologic Disease [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 10). https://acrabstracts.org/abstract/engaging-patients-and-parents-to-improve-mental-health-for-youth-with-rheumatologic-disease/. Accessed February 23, 2019.
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