Comprehensive Assessment of Quality of Life, Functioning, and Mental Health in Children With Juvenile Idiopathic Arthritis and Noninfectious Uveitis

Abstract

Objective. Pediatric uveitis can lead to sight-threatening complications and can impact quality of life (QoL) and functioning. We aimed to examine health-related QoL, mental health, physical disability, vision-related functioning (VRF), and vision-related QoL in children with juvenile idiopathic arthritis (JIA), JIA-associated uveitis (JIA-U), and other noninfectious uveitis. We hypothesized that there will be differences based on the presence of eye disease.Methods. A multicenter cross-sectional study was conducted at four sites. Patients with JIA, JIA-U, or noninfectious uveitis were enrolled. Patients and parents completed the Pediatric Quality of Life Inventory (PedsQL; healthrelated QoL), the Revised Childhood Anxiety and Depression Scale (RCADS; anxiety/depression), the Childhood Health Assessment Questionnaire (C-HAQ; physical disability), and the Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) (VRF/vision-related QoL). Clinical characteristics and patient-reported outcome measures were compared by diagnosis.Results. Of 549 patients, 332 had JIA, 124 had JIA-U, and 93 had other uveitis diagnoses. Children with JIA-U had worse EYE-Q scores compared to those with JIA only. In children with uveitis, those with anterior uveitis (JIA-U and uveitis only) had less ocular complications, better EYE-Q scores, and worse C-HAQ and PedsQL physical summary scores compared to those with nonanterior disease. In children with anterior uveitis, those with JIA-U had worse PedsQL physical summary and C-HAQ scores than anterior uveitis only. Further, EYE-Q scores were worse in children with bilateral uveitis and more visual impairment. There were no differences in RCADS scores among groups.Conclusion. We provide a comprehensive outcome assessment of children with JIA, JIA-U, and other uveitis diagnoses. Differences in QoL and function were noted based on underlying disease. Our results support the addition of a vision-specific measure to better understand the impact of uveitis.The content herein is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Ophthalmic sequelae and psychosocial impact in pediatric ebola survivors

“…EYE-Q also captures the perceived difficulty in the performance of activities of daily living and the impact vision impairment has on tasks performed by children. 24 , 25 , 26 The parent report for the EYE-Q was comparable between parents and guardians of children with and without an ocular complication. Potential reasons for discrepancies between parent and children report include limited parental awareness of the impact of ocular conditions on activities, and underreporting of vision challenges by children, if the unaffected eye maintains functional vision.…”

A practical approach to uveitis screening in children with juvenile idiopathic arthritis

“…It is essential to strike a balance between acknowledging the limitations and considering the financial, psychological and physical burden associated with uveitis, its complications and the costs of delayed treatment. [34][35][36] We recommend this protocol to be used by eye care professionals who feel more comfortable having a simplified, easy-to-use 'one size fits all' approach that will allow them to practice safely and feel confident to perform uveitis screening on a local setting. This guideline does not aim to replace currently in place 'gold standard' screening protocols where those are being used with confidence.…”

Non-disease specific patient-reported outcome measures of health-related quality of life in juvenile idiopathic arthritis: a systematic review of current research and practice

“…The PedsQL 4.0 Generic Core Scales and the PedsQL 3.0 Rheumatology Module have already been used in JIA [ 62 – 64 ], and also in other rheumatic diseases like lupus erythematosus [ 65 ] or fibromyalgia [ 66 ].…”