Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis

Journal of Patient-Reported Outcomes

Table 1 Demographic and health characteristics of the sample, in aggregate and by exposure to methotrexate

	Total	MTX users	Non-MTX users	P value
	N (%)	N (%)	N (%)	P value
Total N	180	90 (50.0)	90 (50.0)
Demographics
Age in years (range 2–17), mean (SD)	11.8 (3.6)	11.3 (3.7)	12.3 (3.5)	0.0572
Sex				0.7245
Female	138 (76.7)	68 (75.6)	70 (77.8)
Male	42 (23.3)	22 (24.4)	20 (22.2)
Race/Ethnicity				0.1277
White and non-Hispanic	146 (81.1)	69 (76.7)	77 (85.6)
Other	34 (18.9)	21 (23.3)	13 (14.4)
Parent education level				0.3119
≤ High school graduate	48 (26.7)	21 (23.3)	27 (30.0)
Any college	132 (73.3)	69 (76.7)	63 (70.0)
Clinical characteristics
Disease duration^a in years, mean (SD)	7.7 (3.5)	7.4 (3.4)	8.0 (3.6)	0.1853
Physician Global Assessment^b, mean (SD)	0.9 (1.3)	0.9 (1.3)	1.0 (1.4)	0.7725
Overall health rating (range 1–10), mean (SD)	8.2 (2.0)	8.2 (2.1)	8.2 (2.0)	0.9036
Current medications reported using^c:
Non-Biologic DMARD	116 (64.4)	89 (98.9)^d	27 (30.0)	< 0.0001
Biologic DMARD	105 (58.3)	52 (57.8)	53 (58.9)	0.8798
NSAID	93 (51.7)	44 (48.9)	49 (54.4)	0.4558
Steroid	29 (16.1)	15 (16.7)	14 (15.6)	0.8393
Herbals or non-vitamin supplement	13 (7.2)	4 (4.4)	9 (10.0)	0.1499
Frequency of routine visits to rheumatologist				0.0787
Monthly	10 (5.6)	6 (6.7)	4 (4.4)
Every 6 to 8 weeks	12 (6.7)	9 (10.0)	3 (3.3)
Every 3 months	116 (64.4)	61 (67.8)	55 (61.1)
Every 6 months	33 (18.3)	11 (12.2)	22 (24.4)
Every 9–12 months	9 (5.0)	3 (3.3)	6 (6.7)
Satisfaction of child’s medical care				0.1972
Very satisfied	161 (89.4)	84 (93.3)	77 (85.6)
Somewhat satisfied	14 (7.8)	5 (5.6)	9 (10.0)
Somewhat or very dissatisfied	5 (2.8)	1 (1.1)	4 (4.4)

Column percentages are displayed
P-values derived from the chi-squared (χ²) or Wilcoxon tests
MTX methotrexate, DMARDs disease-modifying antirheumatic drugs, NSAIDs nonsteroidal anti-inflammatory drugs, Steroids included joint injections, oral steroids, intravenous steroids, or steroid eye drops
^aDisease duration was calculated by subtracting age of disease onset from age at survey administration date
^bPhysician Global Assessment results are reported based on sub-sample of N = 153 participants who had non-missing values for this measure (N = 78 in the MTX users sub-sample). Physician global assessment has an allowable range of 0–10; the range in the study sample presented in Table 1 was 0–6
^cMedication ategories are not mutually exclusive, therefore, medications do not sum to 100%
^dValue does not equal 100% due to a participant’s discrepancy in self-reporting