Background
Methods
Patients
Demographic and disease characteristics
Physician and patient assessment
Outcome measures
Data entry into the electronic medical record
Data extraction from the PROMIS questionnaire and from the electronic medical record
Statistical methods
Results
Patients
All | Systemic | Psoriatic | Poly RF+ | Poly RF- | Oligo | Extended Oligo | ERA | Other | |
---|---|---|---|---|---|---|---|---|---|
N patients (visits) | 148 (553) | 10 (48) | 3 (21) | 5 (20) | 21 (108) | 70 (228) | 9 (65) | 19 (63) | 11 (28) |
Age in years (mean ± SD) | 13.8 ± 2.8 | 12.3 ± 2.0 | 15.1 ± 1.5 | 15.9 ± 1.3 | 12.7 ± 2.9 | 13.4 ± 2.6 | 13.7 ± 2.6 | 16.2 ± 1.8 | 15.6 ± 2.6 |
Gender: F/M | 114/34 | 7/3 | 2/1 | 4/1 | 17/4 | 56/14 | 9/0 | 13/6 | 6/5 |
Years followed (mean ± SD) | 4.5 ± 3.3 | 5.5 ± 3.1 | 5.0 ± 4.4 | 4.4 ± 3.2 | 5.0 ± 2.9 | 4.0 ± 3.3 | 5.4 ± 2.8 | 2.9 ± 1.6 | 6.1 ± 5.3 |
% ANA+ | 41% | 50% | 33% | 80% | 52% | 31% | 67% | 37% | 36% |
% RF+ | 5% | 0% | 0% | 100% | 0% | 1%a | 11% | 0% | 0% |
% B27+ | 11% | 0% | 33% | 0% | 0% | 9% | 11% | 42% | 0% |
Race/Ethnicity (%) | |||||||||
White/non-Hispanic | 45.3% | 70.0% | 0% | 20.0% | 38.1% | 45.7% | 55.6% | 47.4% | 45.5% |
Hispanic | 34.5% | 30.0% | 66.7% | 60.0% | 47.6% | 34.3% | 33.3% | 26.3% | 9.1% |
African-American | 13.5% | 0% | 0% | 20.0% | 4.8% | 12.9% | 11.1% | 21.0% | 27.2% |
Asian | 5.4% | 0% | 33.3% | 0% | 9.5% | 4.3% | 0% | 5.3% | 18.2% |
Other | 1.4% | 0% | 0% | 0% | 0% | 2.9% | 0% | 0% | 0% |
HRQOL domain scores
All | Systemic | Psoriatic | Poly RF+ | Poly RF- | Oligo | Extended Oligo | ERA | Other | |
---|---|---|---|---|---|---|---|---|---|
Mobility | |||||||||
raw | 3.5 ± 3.7 | 2.9 ± 3.8 | 5.2 ± 3.5 | 3.1 ± 4.2 | 3.1 ± 2.9 | 3.4 ± 3.7 | 3.0 ± 4.0 | 4.0 ± 3.6 | 4.5 ± 4.4 |
T | 26.9 ± 6.6 | 25.7 ± 6.8 | 30.0 ± 5.8 | 26.1 ± 7.9 | 26.3 ± 5.2 | 26.8 ± 6.6 | 26.2 ± 7.4 | 27.8 ± 6.2 | 29.1 ± 8.6 |
Anxiety | |||||||||
raw | 3.3 ± 3.9 | 3.1 ± 3.4 | 4.9 ± 3.9 | 4.2 ± 3.6 | 3.7 ± 4.3 | 2.8 ± 3.8 | 3.6 ± 3.9 | 3.6 ± 4.3 | 4.1 ± 3.1 |
T | 44.9 ± 10.9 | 44.3 ± 9.7 | 49.4 ± 10.4 | 47.3 ± 10.1 | 45.6 ± 11.9 | 43.3 ± 10.6 | 46.0 ± 10.9 | 45.2 ± 11.9 | 47.5 ± 8.5 |
Depression | |||||||||
raw | 2.2 ± 3.2 | 2.8 ± 3.0 | 3.4 ± 3.0 | 2.9 ± 3.7 | 2.7 ± 3.9 | 1.6 ± 2.8 | 2.2 ± 3.1 | 1.9 ± 3.4 | 2.3 ± 2.8 |
T | 44.7 ± 9.0 | 47.0 ± 8.6 | 48.9 ± 8.5 | 46.8 ± 9.9 | 46.1 ± 10.2 | 43.2 ± 8.1 | 45.2 ± 8.5 | 43.6 ± 9.4 | 45.3 ± 8.4 |
Fatigue | |||||||||
raw | 4.2 ± 4.1 | 2.9 ± 3.2 | 6.0 ± 4.0 | 3.9 ± 4.2 | 4.5 ± 4.3 | 4.0 ± 4.1 | 4.1 ± 4.2 | 4.7 ± 4.3 | 5.4 ± 2.9 |
T | 48.5 ± 10.8 | 45.2 ± 8.8 | 53.1 ± 10.2 | 47.1 ± 11.6 | 49.0 ± 11.5 | 47.9 ± 10.8 | 48.3 ± 10.8 | 49.7 ± 11.1 | 52.2 ± 7.5 |
Relationship | |||||||||
raw | 13.3 ± 3.3 | 12.8 ± 3.5 | 15.2 ± 1.2 | 13.1 ± 3.0 | 12.3 ± 4.1 | 13.5 ± 3.1 | 13.0 ± 2.9 | 14.0 ± 3.2 | 14.2 ± 2.0 |
T | 52.4 ± 8.8 | 51.1 ± 9.4 | 57.7 ± 4.8 | 50.1 ± 7.6 | 50.0 ± 10.3 | 52.8 ± 8.4 | 50.1 ± 7.9 | 54.7 ± 8.7 | 54.2 ± 6.6 |
Pain Interference | |||||||||
raw | 5.2 ± 4.7 | 3.1 ± 3.6 | 7.5 ± 5.1 | 4.7 ± 4.4 | 4.9 ± 4.8 | 5.3 ± 4.9 | 5.3 ± 4.6 | 6.0 ± 4.6 | 5.5 ± 4.1 |
T | 50.0 ± 10.5 | 45.6 ± 8.6 | 54.4 ± 11.3 | 48.7 ± 10.0 | 49.3 ± 10.8 | 50.2 ± 10.8 | 50.5 ± 10.3 | 51.9 ± 10.2 | 51.1 ± 8.8 |
Univariate linear mixed effects models of HRQOL domain scores
Independent Variables | Coefficient Estimate (Standard Error) | p-value | 95% Confidence Intervals |
---|---|---|---|
Gender | |||
Male | −4.08 (1.58) | <.0001 | (−7.18, −0.97) |
Female | reference | ||
Race | |||
Asian | −4.96 (2.93) | 0.091 | (−10.73, 0.81) |
Black | −0.99 (2.08) | 0.635 | (−5.08, 3.11) |
Other | 1.1 (1.34) | 0.409 | (−1.52, 3.73) |
White | reference | ||
Hispanic Ethnicity | |||
Hispanic | 1.31 (1.43) | 0.359 | (−1.50, 4.12) |
Not Hispanic | reference | ||
Diagnosis | |||
Enthesitis | −0.46 (1.73) | 0.793 | (−3.86, 2.95) |
Other | 0.66 (2.29) | 0.772 | (−3.83, 5.16) |
Psoriatic | 2.55 (2.97) | 0.391 | (−3.28, 8.38) |
Polyarthritis Group | 1.9 (1.37) | 0.166 | (−0.79, 4.59) |
Systemic | −1.11 (2.77) | 0.688 | (−6.55, 4.33) |
Oligo | reference | ||
ANA Present | 0.01 (1.12) | 0.99 | (−2.19, 2.22) |
ANA Absent | reference | ||
RF Present | −0.37 (2.32) | 0.874 | (4.93, 4.20) |
RF Absent | reference | ||
HLA-B27 Present | − 1.15 (1.74) | 0.508 | (−4.58, 2.27) |
HLA-B27 Absent | reference | ||
Age at Visit | −0.02 (0.19) | 0.926 | (−0.39, 0.36) |
Joint Count | 0.36 (0.12) | 0.002 | (0.14, 0.60) |
Patient Pain Score | 0.35 (0.12) | 0.004 | (0.12, 0.58) |
Patient Global Assessment | −1.16 (0.16) | <.0001 | (−1.48, −0.84) |
Physician Global Assessment | 0.49 (0.14) | 0.0004 | (0.22, 0.76) |
Anxiety PROMIS | 0.59 (0.03) | <.0001 | (0.54, 0.64) |
Mobility PROMIS | 0.36 (0.05) | <.0001 | (0.25, 0.46) |
Pain Interference PROMIS | 0.3 (0.04) | <.0001 | (0.23, 0.37) |
Peer Relationships PROMIS | −0.26 (0.04) | <.0001 | (− 0.34, − 0.19) |
Physical Function PROMIS | 0.34 (0.03) | <.0001 | (0.28, 0.41) |
Multivariable linear mixed effects model of HRQOL domain scores
Independent Variables | Coefficient Estimate (Standard Error) | p-value | 95% Confidence Intervals |
---|---|---|---|
Intercept | 22.96 (1.87) | <.0001 | (19.26, 26.66) |
Race | |||
Asian | −3.71 (1.61) | 0.022 | (−6.88, −0.54) |
Black | −1.44 (1.14) | 0.209 | (−3.68, 0.81) |
Other | 0.12 (0.78) | 0.877 | (−1.41, 1.65) |
White | reference | ||
Patient Global Assessment | −0.5 (0.13) | 0.0001 | (−0.75, − 0.25) |
Anxiety PROMIS | 0.57 (0.03) | <.0001 | (0.52, 0.63) |
Screening by PROMIS to recognize children needing referral for mental health services
Visit during study period | Months since 1st study period visit | Age at visit | Gender | JIA Category | Arthralgia present | Arthritis flare | Joint count | Patient Global Assessment | Physician Global Assessment | Subsequent concerns expressed |
---|---|---|---|---|---|---|---|---|---|---|
1st | 0 | 8.6 | F | Oligo-p | yes | no | 0 | 10 | 1 | |
1st | 0 | 8.8 | F | Poly RF- | yes | yes (severe) | 10 | 3 | 7 | sibling conflict |
1st | 0 | 9.4 | F | Oligo-p | yes | yes (mild) | 2 | N/A | 3 | |
1st | 0 | 13.1 | F | Oligo-p | yes | no | 0 | 5 | 1 | parents’ divorce |
1st | 0 | 14.6 | F | Poly RF- | yes | no | 0 | 4 | 1 | |
1st | 0 | 15 | F | Oligo-p | no | no | 0 | N/A | 0 | |
1st | 0 | 16.1 | M | Poly RF- | no | no | 0 | 10 | 1 | |
2nd | 8.7 | 8.7 | F | Poly RF- | yes | no | 0 | 2 | 1 | father’s recent CVA |
3rd | 4.1 | 9.3 | F | Poly RF- | yes | yes (severe) | 17 | 5 | 9 | school bullying |
2nd | 9.0 | 14 | F | Poly RF- | no | no | 0 | 3 | 2 | conflict with parents and siblings |
2nd | 2.8 | 15.6 | M | Poly RF- | no | no | 0 | 5 | 1 | |
2nd | 9.9 | 16.2 | F | Poly RF+ | no | no | 0 | 10 | 2 | parents’ marital conflict |
3rd | 27.8 | 16.3 | F | ERA | yes | yes (mild) | 0 | 7 | 4 | |
3rd | 6.1 | 16.5 | F | ERA | yes | yes | 4 | 4.5 | 7 | |
3rd | 16.5 | 16.9 | F | Poly RF- | yes | no | 0 | 8 | 4 | school bullying |