The 2020 Pediatric Rheumatology Symposium, originally scheduled for April 29 – May 2, was postponed due to COVID-19; therefore, abstracts were not presented as scheduled.
Date: Friday, May 1, 2020
Session Title: Poster Breakout 6 – Patient Experience & Care Optimization
Session Type: Poster Breakout Session
Session Time: 4:30PM-5:00PM
Background/Purpose: Adolescents with juvenile fibromyalgia syndrome (JFMS) present with a myriad of mental health and neuropsychological symptoms, including dyscognition (“brain fog”); however, patient-proxy agreement on the severity of these co-morbidities is unclear as are their psychosocial contributors. We aimed to 1) determine patient-proxy agreement on mental health and neuropsychological co-morbidities, and 2) identify psychosocial factors associated with the presence of subjective dyscognition in JFMS.
Methods: This was a cross-sectional cohort study of children 12-17 years old diagnosed with JFMS according to the 2010 ACR criteria, seen in a specialty pediatric rheumatology pain clinic from 7/2017-9/2019, and one of their caregivers. Exclusion criteria included non-English speaking patients, use of stimulant medication, and a medical condition precluding completion of assessments. All subjects completed study questionnaires, complemented by retrospective chart review. Subjects with elevated scores (≥ 65) on The Children’s Depression Inventory (CDI-2) or endorsing item 8 (suicidal thoughts) on the CDI-2 triggered the study’s mental health (MH) safety check and were assessed for active suicidal ideation. We assessed patient-proxy agreement using intra-class correlation coefficients (ICCs) and mean differences between patient and proxy scores using Wilcoxon signed-rank test. We also performed multivariate linear regression analyses to identify factors independently associated with subjective dyscognition as measured by the Pediatric Quality of Life (PedsQL) Cognitive Functioning Scale.
Results: Thirty-one patients completed the study. The majority were female (87%), non-Hispanic (90%), and Caucasian (81%). Median age at enrollment was 15 years (IQR: 14-16). Patients had a median pain duration of 12 months (IQR: 6-36) and a median visual analog pain score (0-100) of 59 (IQR: 32-68). According to the Resilience Scale 14-item, patient resilience was low (mean=69, SD=16) and parental resilience was moderate (mean=81, SD=12). Sixteen subjects (52%) triggered a mental health safety check, 8 of whom endorsed suicidal ideation on the CDI-2. None had an active plan or intent. Patient-proxy agreement was good to excellent for all measures (Table 1) and this agreement was stronger among patients who triggered the MH safety check (Table 2). In bivariate analyses, greater anxiety (β=-0.76 [-1.30, -0.21]), depression (β=-0.87 [-1.51, -0.23]), functional disability (β=-0.87 [-1.72, 0.02]) and lower patient resilience (β=0.49 [-0.06, 1.04]) were significantly associated with dyscognition (Table 3). In adjusted analyses, depression (β=-1.88 [-3.21, -0.55]) remained independently associated with greater dyscognition (p=0.01).
Conclusion: Patient-proxy agreement on mental health and neuropsychological symptoms was good to excellent in JFMS. This agreement was strengthened among adolescents with greater depression, which was also found to be an independent predictor of dyscognition. These findings suggest that parental reports of symptoms among youth with JFMS are reliable, especially when there is a large mental health burden among affected youth.
To cite this abstract in AMA style:Gmuca S, Sonagra M, Xiao R, Thomas N, Miller K, Young J, Weiss P, Sherry D, Gerber J. Patient-Proxy Agreement on Mental Health and Neuropsychological Symptoms Among Youth with Juvenile Fibromyalgia Syndrome [abstract]. Arthritis Rheumatol. 2020; 72 (suppl 4). https://acrabstracts.org/abstract/patient-proxy-agreement-on-mental-health-and-neuropsychological-symptoms-among-youth-with-juvenile-fibromyalgia-syndrome/. Accessed September 26, 2022.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-proxy-agreement-on-mental-health-and-neuropsychological-symptoms-among-youth-with-juvenile-fibromyalgia-syndrome/