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

Weitzman, Elissa R.; Wisk, Lauren E.; Salimian, Parissa K.; Magane, Kara M.; Dedeoglu, Fatma; Hersh, Aimee O.; Kimura, Yukiko; Mandl, Kenneth D.; Ringold, Sarah; Natter, Marc

doi:10.1186/s41687-017-0025-2

Journal of Patient-Reported Outcomes

Table 4 Multivariate regression analyses measuring associations among pediatric quality of life (PedsQL) and disease activity/symptoms and treatment burden (N = 180)

From: 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

	PedsQL total score		PedsQL psychosocial score		PedsQL physical score
	β (S.E.)	p-value	β (S.E.)	p-value	β (S.E.)	p-value
Model 1a-1d Individual PROs
1a) Pain interference^a	−1.30 (0.05)	< 0.0001	−1.17 (0.04)	< 0.0001	−1.53 (0.10)	< 0.0001
1b) Morning stiffness
>15 min	−19.92 (0.91)	< 0.0001	−16.77 (1.23)	< 0.0001	−25.65 (2.05)	< 0.0001
≤ 15 min	reference		reference		reference
1c) Serious medication side effect
Any	−12.54 (3.77)	0.0009	−10.82 (3.54)	0.0023	−15.68 (4.75)	0.0010
None	reference		reference		reference
1d) Methotrexate status
With methotrexate intolerance	−3.66 (1.42)	0.0100	−3.96 (0.77)	< 0.0001	−3.15 (3.20)	0.3239
On methotrexate without intolerance	4.89 (1.24)	< 0.0001	4.84 (1.43)	0.0007	4.91 (2.49)	0.0487
Not on methotrexate	reference		reference		reference
Model 2 Disease Burden PROs
Pain interference^a	−1.27 (0.05)	< 0.0001	−1.17 (0.05)	< 0.0001	−1.45 (0.09)	< 0.0001
Morning stiffness
>15 min	−1.99 (0.50)	< 0.0001	−0.28 (0.92)	0.7611	−5.13 (1.81)	0.0046
≤ 15 min	reference		reference		reference
Model 3 Treatment Burden PROs
Serious medication side effect
Any	−11.68 (3.77)	0.0020	−9.87 (3.70)	0.0076	−15.10 (4.56)	0.0009
None	reference		reference		reference
Methotrexate status
With methotrexate intolerance	−2.13 (1.34)	0.1121	−2.66 (0.30)	< 0.0001	−1.15 (3.46)	0.7406
On methotrexate without intolerance	3.89 (1.64)	0.0175	4.01 (2.14)	0.0607	3.73 (1.67)	0.0257
Not on methotrexate	reference		reference		reference
Model 4 All PROs
Pain interference^a	−1.21 (0.07)	< 0.0001	−1.12 (0.07)	< 0.0001	−1.38 (0.08)	< 0.0001
Morning stiffness
>15 min	−2.39 (0.17)	< 0.0001	−0.73 (0.80)	0.3628	−5.48 (1.88)	0.0035
≤ 15 min	reference		reference		reference
Serious medication side effect
Any	−3.64 (1.89)	0.0548	−2.67 (2.18)	0.2201	−5.47 (2.28)	0.0163
None	reference		reference		reference
Methotrexate status
With methotrexate intolerance	−3.24 (0.92)	0.0004	−3.57 (1.06)	0.0008	−2.55 (2.48)	0.3031
On methotrexate without intolerance	1.47 (0.39)	0.0001	1.83 (0.73)	0.0119	0.94 (2.11)	0.6540
Not on methotrexate	reference		reference		reference

All estimates were obtained using generalized estimating equations (GEE) to account for clustering within clinics and were adjusted for demographics including age (continuous), sex, race/ethnicity, parent education, and disease duration (continuous); regression coefficients (β) and their standard errors (SE) are presented
Model 1a-1d assessed association between PedsQL score and each individual PRO
Model 2 assessed association between PedsQL score and both of the disease burden PROs
Model 3 assessed association between PedsQL score and both of the treatment burden PROs
Model 4 included all PROs simultaneously
^aCoefficients represent the change in PedsQL score for a one unit change in the transformed pain interference score (T-score)

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