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Objective: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) questionnaire measures vision-related functioning (VRF) and vision-related quality of life (VRQoL) in children with uveitis. Our aim was to revise the alpha version of the EYE-Q to refine VRF and VRQoL subscales and to assess the validity of the EYE-Q., Methods: Children with juvenile idiopathic arthritis (JIA), JIA-associated uveitis, and other noninfectious uveitis were enrolled. Patients and parents completed the EYE-Q, Pediatric Quality of Life Inventory (overall quality of life), and Childhood Health Assessment Questionnaire (physical functioning). The development site completed the alpha version of the EYE-Q, and the composite sites completed the beta version. We compared item-subscale correlations, internal consistency, and construct and discriminant validity among the different versions., Results: Of the 644 patients enrolled, 61.6% completed the alpha version, and 38.4% the beta version of the EYE-Q. Mean ± SD patient age was 11.1 ± 4.2 years, and 70% were female. Fewer White patients (73.5%) completed the alpha version compared to the beta version (86.2%; P < 0.001). With the exception of patient-reported VRF, both versions had similar item-subscale correlations. Version comparisons on scale internal consistencies indicated significant differences for parent- and patient-reported VRF, but each scale had a Cronbach's α of >0.80 beta. When data were combined, the EYE-Q showed significant differences between JIA-only and uveitis patients on all parent and patient scores, except for patient-reported VRF., Conclusion: The EYE-Q appears to be a valid measure of VRF and VRQoL in pediatric uveitis. Our results suggest it may be used as an outcome measure in multicenter pediatric uveitis studies., (© 2020 American College of Rheumatology.)

Purpose: To describe issues of concern to children with chronic anterior uveitis; to consider the psychological impact of chronic anterior uveitis on children's lives; and to understand the effect of a child's chronic illness on other family members., Design: Expert commentary., Methods: Author experiences were supplemented by a review of pertinent medical literature and by consideration of content from semi-structured, separate patient and parent interviews., Results: Vision loss and the fear of blindness are not the only stressors for children with chronic anterior uveitis and their families; of additional concern are the burdens of examinations and treatment regimens, as well as drug toxicities. Children with chronic anterior uveitis experience medical, academic, interpersonal, psychological, and developmental challenges. The impact of disease extends to other members of a patient's family as well; parents experience challenges in similar domains. Problems with adherence to medical regimens are common. Both the disease and its treatment affect quality of life, and can interfere with successful management of disease and transition to autonomy in adulthood, as reported for other chronic conditions. Coping processes vary greatly between different families., Conclusions: Eye examinations and the rigors of long-term treatment often influence the psychosocial health of patients and families; physicians who are aware of these issues can help patients and families cope with chronic illness and may improve outcomes. Further psychosocial research to understand the experiences of children dealing with chronic anterior uveitis is warranted; this commentary can serve as a foundation for development of age- and disease-specific research questions., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) is a novel measure of vision-related quality of life (QOL) and function in children. We aim to determine the validity of the EYE-Q in childhood uveitis., Methods: We abstracted medical record data on arthritis and uveitis in a convenience sample of children with juvenile idiopathic arthritis (JIA) and/or uveitis. In addition to the EYE-Q, parents and patients completed questionnaires on overall QOL (Pediatric Quality of Life Inventory [PedsQL]), and physical functioning (Childhood Health Assessment Questionnaire [C-HAQ])., Results: Among 57 children (8 JIA, 24 JIA and uveitis, 25 uveitis alone), 102 ocular examinations were performed within 1 month of completing questionnaires. Uveitis patients had bilateral disease (69%), anterior involvement (78%), synechiae (51%), and cataracts (49%). Children with vision loss in their better eye (visual acuity [VA] 20/50 or worse) had worse EYE-Q (P = 0.006) and PedsQL (P = 0.028) scores, but not C-HAQ scores. The EYE-Q moderately correlated with logMAR VA (rs  = -0.43), PedsQL (rs  = 0.43), and C-HAQ (rs  = -0.45), but was not correlated with anterior chamber cells or intraocular pressure. The PedsQL and C-HAQ did not correlate with VA or cells. There were strong correlations between the parent and child EYE-Q (rs  = 0.62). Cronbach's α for the child report was 0.91. The EYE-Q had strong test-retest reliability (rs  = 0.75)., Conclusion: The EYE-Q may be an important tool in the assessment of visual outcomes in childhood uveitis and an improvement over general measures in detecting changes in vision-related function., (© 2015, American College of Rheumatology.)

Background: Juvenile idiopathic arthritis-associated uveitis (JIA-U) can lead to poor visual outcomes and impact a child's quality of life (QOL) and function. Our aim is to identify risk markers of JIA-U and examine differences in the QOL of children with JIA and JIA-U., Methods: Rheumatology and ophthalmology record reviews and questionnaires were completed every 4-6 months on 287 children with JIA. We collected arthritis, uveitis, and QOL data. We examined data through last study visit., Results: There were 52/287 (18%) children with JIA-U who were younger at arthritis diagnosis, had oligoarticular persistent JIA, and ANA positive. Confirmed uveitis predictors were age at JIA diagnosis (OR = 0.86) and oligoarticular subtype (OR = 5.92). They had worse vision specific QOL and function, but similar general QOL. Blindness occurred in 17.5% of children but was more common in African American children compared to non-Hispanic Caucasian children ((5/7 (71%) vs. 2/29 (7%), p <0.001) despite a similar uveitis prevalence (22% vs. 16%). Both races had similar complications, although band keratopathy was more frequent in African Americans (75% vs. 15.6%, p = 0.003)., Conclusions: We confirm young age at JIA diagnosis and the oligoarticular JIA subtype as predictors of uveitis development. Although we were unable to identify predictors of ocular complications or blindness, AA children appeared to have a more severe disease course manifested by increased ocular complications, vision loss and blindness. Potential causes that warrant additional study include underlying disease severity, access to medical care and referral bias. Further investigation of the risk factors for vision-compromising uveitis and its' long-term effects should be conducted in a large racially diverse population.

To examine the association between ethnicity and disease activity in patients with juvenile idiopathic arthritis (JIA), and to determine the association of ethnicity with disease severity and disability in this population. CARRAnet, a US database containing information (collected between May 2010 and June 2011) on almost 3,000 subjects with JIA, was used. Demographic variables were compared between Hispanic patients and non-Hispanic patients. Mann-Whitney and chi-square tests were used to compare indicators of disease activity, as well as imaging evidence of joint damage, and Childhood Health Assessment Questionnaire (CHAQ) scores between ethnicities. Two linear regression models were used to determine the association of ethnicity with number of active joints in JIA, and the association between ethnicity and disability (CHAQ scores). A total of 2,704 patients with JIA (277 Hispanic; 2,427 non-Hispanic) were included. Income and health insurance coverage were higher in non-Hispanics. RF-positive polyarticular JIA, positive RF and anti-CCP, as well as use of systemic steroids were more frequent in Hispanics. Imaging evidence of joint damage was present in 32 % of the Hispanic patients compared to 24 % of the non-Hispanic patients (p = 0.008). In multivariate linear regression analyses, the number of active joints was significantly higher in Hispanics than in non-Hispanics (p = 0.03), as well as CHAQ scores (p = 0.003), after adjusting for confounders. Hispanic patients with JIA had higher disease activity than non-Hispanic patients, as well as higher disease severity and disability. Since ethnicity influences disease activity, severity, and disability, different management and treatment plans should be planned accordingly.

Objective: To determine the validity and reliability of a novel questionnaire to measure vision-related quality of life (VRQOL) in children ages 8-18 years for use in juvenile idiopathic arthritis (JIA)-associated uveitis: the Effects of Youngsters' Eyesight on Quality of Life (EYE-Q)., Methods: Several steps validated the EYE-Q. We interviewed experts and children on how vision affects a child's activities. We developed new items and selected relevant items from existing instruments. We administered initial versions of the EYE-Q to normal-sighted children and those with JIA-associated uveitis. For this study, children with various (or no) ocular conditions were recruited from a clinical population. Visual acuity and contrast sensitivity were performed, and the EYE-Q and Pediatric Quality of Life Inventory (PedsQL) were administered. The EYE-Q was repeated 10 days later. Patients, parents, and physicians rated vision severity., Results: Of 120 patients, 48% were female, 46.7% had no visual impairment, and 53.3% had bilateral eye involvement. The mean age was 11.3 years. There were significant differences in the measures based on visual acuity (P < 0.001). Children with more severe visual acuity and bilateral eye involvement had worse EYE-Q scores (P < 0.001). There were significant associations between the EYE-Q and PedsQL (r = 0.375), repeat EYE-Q (r = 0.864), and clinical measures of ocular disease (r = -0.620)., Conclusions: Our study provides evidence of the validity and reliability of the EYE-Q in the measurement of VRQOL. The EYE-Q may complement clinical measures of visual impairment and overall QOL and become an important tool in the assessment of QOL in JIA-associated uveitis., (Copyright © 2011 by the American College of Rheumatology.)

Background: Studies of quality of life (QOL) in children with juvenile idiopathic arthritis (JIA) have focused on changes in musculoskeletal function secondary to arthritis. The role of visual functionality as a result of JIA-associated uveitis and its complications has not been examined. We evaluated the individual impact of physical and visual disability on QOL in children with and without uveitis., Methods: We administered patient-based questionnaires that measured visual function, physical function, and overall QOL to 27 children with JIA or idiopathic uveitis. Demographic data, assessed joint involvement, and reviewed medical records were recorded. Groups with and without uveitis were compared for differences in arthritis and uveitis disease characteristics with use of the Wilcoxon-Mann-Whitney, chi2, and Fisher exact tests. Associations between physical or visual function, and overall QOL were measured with use of Pearson's correlation coefficient., Results: Of 27 patients, 85.2% had had arthritis and 51.9% had had uveitis. The group without uveitis had increased morning stiffness (p = 0.036). Patients with uveitis reported more eye redness (p = 0.033) and photophobia (p = 0.013) than those without uveitis. We observed moderate associations between overall QOL and visual function in the uveitis group (r = -0.579) and overall QOL and physical function in the nonuveitis group (r = -0.562)., Conclusions: This study demonstrates that visual impairment is an important component of QOL in children with uveitis. It suggests that QOL studies should incorporate both visual and physical function measures in their analyses, especially because many children with JIA also suffer from uveitis and visual impairment., (Copyright 2010 American Association for Pediatric Ophthalmology and Strabismus. Published by Mosby, Inc. All rights reserved.)