Uveitis in children

Angeles‐Han, Sheila T.; Rabinovich, C. Egla

doi:10.1097/bor.0000000000000316

Cited by 27 publications

(11 citation statements)

References 46 publications

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“…Our group proposed a Paediatric Uveitis Outcome Measure (PROMS) in 2012 [1] in the present paper we have started validation by providing empirical evidence of those measures sensitive to change and how PROMS relate to indicators thought clinically relevant as prognosticators of lifelong disability. The importance of including patient and parent perspectives to capture the overall impact of disease [17], as well as the physicians’ global assessment of the disease activity has been shown by the significant size of these changes over time, and their relative independence from other metrics.…”

Section: Discussionmentioning

confidence: 99%

Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC)

et al. 2019

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Background JIA-associated uveitis (JIAU) is a serious, sight-threatening disease with significant long-term complications and risk of blindness, even with improved contemporary treatments. The MIWGUC was set up in order to propose specific JIAU activity and response items and to validate their applicability for clinical outcome studies. Methods The group consists of 8 paediatric rheumatologists and 7 ophthalmologists. A consensus meeting took place on November 2015 in Barcelona (Spain) with the objective of validating the previously proposed measures. The validation process was based on the results of a prospective open, international, multi-centre, cohort study designed to validate the outcome measures proposed by the initial MIWGUC group meeting in 2012. The meeting used the same Delphi and nominal group technique as previously described in the first paper from the MIWGUC group (Arthritis Care Res 64:1365–72, 2012). Patients were included with a diagnosis of JIA, aged less than 18 years, and with active uveitis or an uveitis flare which required treatment with a disease-modifying anti-rheumatic drug. The proposed outcome measures for uveitis were collected by an ophthalmologist and for arthritis by a paediatric rheumatologist. Patient reported outcome measures were also measured. Results A total of 82 patients were enrolled into the validation cohort. Fifty four percent (n = 44) had persistent oligoarthritis followed by rheumatoid factor negative polyarthritis (n = 15, 18%). The mean uveitis disease duration was 3.3 years (SD 3.0). Bilateral eye involvement was reported in 65 (79.3%) patients. The main findings are that the most significant changes, from baseline to 6 months, are found in the AC activity measures of cells and flare. These measures correlate with the presence of pre-existing structural complications and this has implications for the reporting of trials using a single measure as a primary outcome. We also found that visual analogue scales of disease activity showed significant change when reported by the ophthalmologist, rheumatologist and families. The measures formed three relatively distinct groups. The first group of measures comprised uveitis activity, ocular damage and the ophthalmologists’ VAS. The second comprised patient reported outcomes including disruption to school attendance. The third group consisted of the rheumatologists’ VAS and the joint score. Conclusions We propose distinctive and clinically significant measures of disease activity, severity and damage for JIAU. This effort is the initial step for developing a comprehensive outcome measures for JIAU, which incorporates the perspectives of rheumatologists, ophthalmologists, patients and families.

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Section: Discussionmentioning

confidence: 99%

Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC)

et al. 2019

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“…The 6 highest-scoring PROMs used in pediatric ophthalmology each received a score of sufficient quality in four of 7 measurement property subcategories (Table 1 ). These included four ‘VRQoL’ measures: National Eye Institute-Visual Function Questionnaire (NEI-VFQ) [ 45 , 46 ], Effects of Youngsters’ Eyesight on Quality of Life (EYE-Q) [ 47 , 48 ], Vision-Related Quality of Life for Children and Young People (VQoL_CYP) [ 49 , 50 ], Impact of Vision Impairment for Children (IVI_C) [ 51 , 52 ] and two measures of ‘Functional Vision’: Functional Vision Quality of Life for Children and Young People (FVQ_CYP) [ 53 ] and Cardiff Visual Ability Questionnaire for Children (CVAQC) [ 54 ]. Of these, 4/6 (i.e.…”

Section: Resultsmentioning

confidence: 99%

Patient-reported outcome measures for retinoblastoma: a scoping review

Janic¹,

Bowden²,

Levy³

et al. 2020

J Patient Rep Outcomes

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Background Retinoblastoma is a childhood retinal cancer with lifelong consequences such as vision loss and increased risk of second cancer. Patient-reported outcome measures (PROMs) are instruments that measure outcomes related to health directly reported by patients. The purpose of this study was to determine the scope, characteristics and quality of PROMs used in retinoblastoma and related fields of pediatric ophthalmology and pediatric oncology. Methods Databases MEDLINE and Embase were searched for studies in the English language that reported on PROMs used in retinoblastoma, pediatric oncology, or pediatric ophthalmology; grey literature and studies reporting on developmental PROM phases were excluded. PROMs were grouped by the construct measured and domains assessed, and classified as condition-specific or generic. A subsequent search was then conducted in MEDLINE and Embase for studies assessing measurement properties of the identified PROMs. PROMs with associated studies were assessed for their methodologic quality using the COnsensus-based standard for the Selection of health Measurement INstruments (COSMIN) strategy. Results Among 110 eligible studies uncovered by the database searches, 143 PROMs were identified: one retinoblastoma-specific, 56 ophthalmology- and 86 oncology-related. The most common construct measured was ‘health-related quality of life’ and the most common domain assessed was emotional well-being. Of the 143 PROMs, 100 had associated validation studies; the one retinoblastoma-specific PROM was not validated. Quality assessment revealed 34/100 PROMs received a score of sufficient quality in both subcategories of ‘overall content validity’; 3/100 received a score of sufficient quality in both subcategories of ‘internal structure’; 0/100 received a score of sufficient quality in all three subcategories of ‘remaining measurement properties’. The Patient-Reported Outcome Measure Information System (PROMIS) Pediatric Profile-25 was the highest-scoring PROM identified, meeting COSMIN standards for 2/3 measurement property categories (and 5/7 subcategories). Eleven additional PROMs were identified which had sufficient scores in 1/3 measurement property categories (and 5/7 subcategories). Conclusion The study identified several PROMs from the pediatric ophthalmology and pediatric oncology literature that could be relevant to the retinoblastoma population, but many have limits to their validation. Future development of a retinoblastoma-specific PROM, performed in partnership with retinoblastoma patients to support optimal content validity, could first focus on the selection and definition of the optimal construct to measure, followed potentially by adaptation and further validation of the relevant PROMs with strong methodologic quality identified in this study.

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“…5,11,12 The pathophysiology of noninfectious uveitis has not exactly been revealed. 13 It is not clear whether the inflammation in uveitis is really limited to the eye or may extend itself systemically. [14][15][16][17] A number of biomarkers have been identified in JIA-uveitis [18][19][20] and in auto-immune uveitis.…”

Section: Introductionmentioning

confidence: 99%

Physical and Psychosocial Health in Pediatric Uveitis Patients

Wieringa

Berkel

Los

et al. 2021

Ocular Immunology and Inflammation

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Background:To investigate the possible associations between childhood noninfectious uveitis and cardio-respiratory fitness, physical activity, health related quality of life and fatigue. Methods: Cross-sectional analysis of 23 patients with noninfectious uveitis, aged 8-18 years. BMI, exercise capacity, muscle strength and physical activity were measured. Health-related quality of life and fatigue were assessed. The results were compared to standardized values for age matched healthy children. Results: Twenty-three patients were included. Children with uveitis had a higher bodyweight and body mass index. Children with uveitis had lower cardio-respiratory fitness and they were less physically active, but they experienced a normal quality of life and normal fatigue. Parents of children with uveitis reported a lower quality of life and more fatigue for their children than parents of healthy children. Conclusion:Our study indicates that children with noninfectious uveitis are at risk of developing lower physical and psychosocial health.

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Uveitis in children

Cited by 27 publications

References 46 publications

Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC)

Proposal for a definition for response to treatment, inactive disease and damage for JIA associated uveitis based on the validation of a uveitis related JIA outcome measures from the Multinational Interdisciplinary Working Group for Uveitis in Childhood (MIWGUC)

Patient-reported outcome measures for retinoblastoma: a scoping review

Physical and Psychosocial Health in Pediatric Uveitis Patients

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