Session Information
Date: Monday, October 22, 2018
Title: Patient Outcomes, Preferences, and Attitudes Poster I: Patient-Reported Outcomes
Session Type: ACR Poster Session B
Session Time: 9:00AM-11:00AM
Background/Purpose:
Juvenile Myositis (JM) is an autoimmune disease that negatively impacts quality of life (QoL) outcomes via muscle weakness and vasculopathic rashes. The relative contribution of pain, fatigue, and emotional distress to QoL in JM is incompletely understood. In this cross-sectional study, we assessed the relationships of pain, fatigue and emotional distress to QoL in JM.
Methods:
JM patient-parent dyads (5-17 yo) were enrolled at routine visits. Descriptive statistics were calculated for demographic and clinical variables. Generic QoL was measured by PedsQL Generic Core Scales (PedsQL-GC) self-report (8-17yo) and parent-proxy report (5-17yo), while Patient-Reported Outcomes Measurement Information System (PROMIS¨) patient (8-17yo) and parent-proxy (5-17yo) fixed short forms were used to assess depressive symptoms, anxiety, fatigue, and pain interference. Since PedsQL-GC were not normally distributed, multivariable quantile regression was performed with PROMIS domains on the median PedsQL-GC measures.
Results:
Seventy-five JM patient-parent dyads were enrolled, with typical demographic features (n = 71 [94.7%] with dermatomyositis, n = 59 [78.7%] female, n = 59 [78.7%] white, median age = 11.7 yo [IQR: 8.1-14.3]). Descriptive statistics for clinical/patient-reported outcome variables are shown in Table 1. Patient PROMIS Fatigue was significantly associated with PedsQL-GC Physical and Psychological scores across most quartiles. Parent-proxy PROMIS Fatigue was significantly associated with PedsQL-GC Physical scores across all quartiles, but this relationship was not as consistent for PedsQL-GC Psychological scores. While patient/parent-proxy PROMIS Depressive Symptoms, Anxiety, and Pain Interference were significantly associated with most PedsQL-GC Physical and Psychological score quartiles in univariable models (not shown), these relationships did not persist in multivariable models. Table 2 displays statistically significant multivariable quantile regression results.
Conclusion:
Our findings demonstrate a uniquely strong relationship between fatigue and physical QoL as measured by both patients and parents. Patient and parent perceptions differed with regards to the relationship of fatigue to psychological QoL, reinforcing the need for both respondents to be engaged. The relationship between disease activity, treatments, fatigue, and QoL warrants further study, as fatigue may be an important target for interventions to improve QoL.
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Table 1: Clinical and Patient-Reported Outcome Variable Descriptives |
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Clinical and Lab Assessments:
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Median (IQR) |
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Physician’s Global Assessment of Disease Activity (PGA) |
1 (0-3) |
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Disease Activity Score (DAS) Total |
3 (0-6) |
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DAS-Muscle |
0 (0-2) |
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DAS-Skin |
1.5 (0-5) |
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Childhood Myositis Assessment Scale (CMAS) |
52 (47-52) |
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CPK |
103 (77.5-141.5) |
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AST |
27 (21.5-31) |
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ALT |
14 (10.5-18.5) |
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LDH |
237 (210-267.5) |
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Aldolase |
5.2 (4.5-6.2) |
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Nailfold Capillary End Row Loops (NFC-ERL) |
6.6 (5.7-7.2) |
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Patient-Reported Outcomes*
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PROMIS (pediatric self-report)
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Anxiety |
38.8 (33.5-47.4) |
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Depressive Symptoms |
35.2 (35.2-50.9) |
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Fatigue |
34.2 (30.3-48.1) |
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Pain Interference |
39.4 (34-50.2) |
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PROMIS (parent-proxy report)
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Anxiety |
47.2 (34.6-56.8) |
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Depressive Symptoms |
42.2 (36.2-54.6) |
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Fatigue |
44.3 (34.1-54.3) |
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Pain Interference |
38.1 (37.8-59.4) |
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PedsQL-Generic Core Scales (PedsQL-GC) (pediatric self-report)
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Physical |
93.3 (80.5-100) |
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Emotional |
95 (78.8-100) |
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Social |
100 (85-100) |
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School |
85 (72.5-100) |
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Psychological |
90 (79.6-98.3) |
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Total |
90.2 (78-97.8) |
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PedsQL-GC (parent-proxy report)
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Physical |
87.5 (75-100) |
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Emotional |
90 (70-100) |
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Social |
95 (75-100) |
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School |
85 (65-100) |
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Psychological |
83.3 (73.3-96.7) |
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Total |
83.7 (73.9-95.7) |
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*PROMIS domains reported as t-scores; n = 56 PROMIS patient self-report (except Pain Interference, n = 55); n = 75 PROMIS parent-proxy report; n = 56 PedsQL-GC patient self-report (except PedsQL-GC School, n = 55); n = 73 PedsQL-GC parent-proxy report
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Table 2: Multivariable Quantile Regression*
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PedsQL-GC Physical
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PedsQL-GC Psychological
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Regression Coefficient (95% CI) |
p-value |
Regression Coefficient (95% CI) |
p-value |
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PROMIS pediatric self-report
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á Depressive Symptoms |
0.235 (-0.853, 0.413) |
0.522 |
-0.268 (-0.857, 0.217) |
0.342 |
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á Anxiety |
0.000 (-0.229, 0.854) |
1.000 |
-0.307 (-0.773, 0.055) |
0.135 |
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á Fatigue |
-0.795 (-1.146, -0.134) |
0.021 |
-0.643 (-1.073, -0.258) |
0.003 |
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á Pain Interference |
-0.644 (-1.191, -0.099) |
0.088 |
-0.123 (-0.358, 0.100) |
0.575 |
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PROMIS parent-proxy report
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á Depressive Symptoms |
-0.065 (-0.809, 0.156) |
0.845 |
-0.457 (-1.291, 0.217) |
0.225 |
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á Anxiety |
0.132 (-0.030, 0.784) |
0.621 |
-0.26 (-1.044, 0.062) |
0.341 |
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á Fatigue |
-1.082 (-1.512, -0.763) |
<0.001 |
-0.565 (-0.773, 0.068) |
0.29 |
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á Pain Interference |
-0.365 (-0.732, 0.073) |
0.066 |
0.000 (-0.610, 0.394) |
1.000 |
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*Results modeled on the median (0.5 quantile)
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To cite this abstract in AMA style:
Fahey KJ, Gray EL, Chang RW, Cella D, Pachman LM, Ardalan K. The Relationship of Pain, Fatigue and Emotional Distress with Quality of Life in Juvenile Myositis [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/the-relationship-of-pain-fatigue-and-emotional-distress-with-quality-of-life-in-juvenile-myositis/. Accessed .« Back to 2018 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-relationship-of-pain-fatigue-and-emotional-distress-with-quality-of-life-in-juvenile-myositis/