A review of patient-reported outcome measures used in uveitis

Senthil, Mallika Prem; Simon, Sumu; Constable, Paul A.

doi:10.1016/j.survophthal.2022.11.004

Cited by 7 publications

(6 citation statements)

References 155 publications

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“…8,13 Moreover, some conditions have a juvenile age-of-onset, exhibiting a substantial negative effect on patients' performance and a dependence on informal caregivers, which may severely impact QoL. 14 Although caring for an individual with visual impairment may have many positive aspects, it can also lead to negative emotional, economic and social impacts. 15,16 Patient support groups exist in many medical fields and can benefit patients on both a practical and an emotional level.…”

Section: Introductionmentioning

confidence: 99%

“…Although these diseases may occur in individuals of any age, they most commonly affect working‐age adults between the third and sixth decades of life, which may cause a significant socioeconomic impact 8,13 . Moreover, some conditions have a juvenile age‐of‐onset, exhibiting a substantial negative effect on patients' performance and a dependence on informal caregivers, which may severely impact QoL 14 . Although caring for an individual with visual impairment may have many positive aspects, it can also lead to negative emotional, economic and social impacts 15,16 …”

Section: Introductionmentioning

confidence: 99%

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Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits

Ostrovsky

Rosenblatt

Hollander³

et al. 2023

Clinical Exper Ophthalmology

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BackgroundSupport groups in ophthalmology may be of utmost importance for patients and caregivers. We aimed to characterise members of an online support group for patients and parents of children with inflammatory eye disease and assess the members' expectations and perceived benefits.MethodsA survey based on a voluntary, anonymous web questionnaire was distributed to the members of the ‘Lirot’ association online support group. The questionnaire included demographic, ocular and systemic information, functional and psychosocial data, support group use patterns, expectations and perceived benefits. Analysis was done for patients and parents.ResultsOut of 67 respondents, 43 (64%) were patients, and 24 (36%) were parents. Fifty‐eight (88%) were women. The mean age of respondents was 42.9 ± 1.34 years. Anterior uveitis was the most common, and most patients had good visual acuity (<0.3 logMAR). Parents reported higher anxiety levels (p = 0.044) and a more significant effect of their child's disease on their general function (p = 0.005). Most members sought several experts' opinions, psychological treatments and alternative medicine. All members used the WhatsApp group, while only approximately half used Facebook (p < 0.001). Members' expectations were fulfilled for social support, a sense of shared experience and being able to help others, but not for receiving information (p < 0.001). All members reported being willing to recommend the group to others.ConclusionsSupport group participation benefited group members. We suggest that ophthalmologists encourage their inflammatory eye disease patients to use online support groups, which may significantly improve their well‐being.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits

Ostrovsky

Rosenblatt

Hollander³

et al. 2023

Clinical Exper Ophthalmology

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“…Uveitis can have detrimental effects on visual function and quality of life (QoL) in affected people and can have serious complications leading to blindness and long-term disability [ 1 – 3 ]. Patient-reported outcome measures (PROMs) are commonly used to assess QoL, and they become increasingly integrated into regulatory drug approval processes and routine clinical practice in the context of uveitis [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

“…The National Eye Institute Visual Function Questionnaire (NEI VFQ) is among the most frequently used PROMs in ophthalmology [ 1 , 5 , 6 ] and assesses vision-related QoL (VR-QoL). It was developed based on a literature review, focus group discussion with patients and expert panel input, covering five eye conditions (cataracts, glaucoma, age-related macular degeneration, diabetic retinopathy, cytomegalovirus (CMV) retinitis) [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

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Piloting Rasch model scoring of the National Eye Institute Visual Function Questionnaire in uveitis

Gittel,

Li,

Dell

et al. 2024

J Ophthal Inflamm Infect

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Introduction The National Eye Institute Visual Function Questionnaire (NEI VFQ) is a common patient-reported outcome measure (PROM) in uveitis trials. Its psychometric properties using state-of-the-art scoring based on Rasch models, a latent trait model that improves accuracy of PROMs assessment, has not yet been investigated. Methods The study participants were recruited online from uveitis patient organizations, where individuals self-reported their uveitis diagnosis and visual acuity level. These participants then completed the NEI VFQ-25. The visual function (VF) and socioemotional (SE) subscales were psychometrically analysed in terms of item fit, targeting, internal consistency, dimensionality, and differential item functioning (DIF), using Rasch models. Criterion validity was examined based on associations between NEI VFQ person measures and recent visual acuity (VA) levels. Results Ninety-nine participants recruited online from uveitis patient organizations (68 women, 31 men; mean age 50 ± 15 years; 46.5% self-reported receiving systematic therapy for uveitis, 0.6% NEI VFQ-25 missing data) were included. The mean difficulty of items was lower than the average person ability. None of the items demonstrated misfit to an extent that would induce noise into the measurement. The consistency metrics person reliability and person separation index of the subscales were 0.85 and 2.34 (NEI VFQ-VF), 0.86 and 2.52 (NEI VFQ-SE), respectively. There was no evidence of multidimensionality and none of the items showed DIF by gender. The differences between item and person measures were 1.44 (NEI VFQ-VF) and 1.03 (NEI VFQ-SE). NEI VFQ-25 person measures were significantly lower in participants with visual impairment (all p values ≤ 0.007). Conclusion Rasch model-based scoring of the re-engineered NEI VFQ-25 demonstrates acceptable internal consistency, item fit and construct validity for assessing two key domains of quality of life in individuals self-reporting uveitis. The PROM was targeted at a higher level of difficulty than present in our heterogeneous sample.

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Humanistic Burden of Noninfectious Uveitis: A Systematic Review and Meta-Analysis

Sriranganathan,

Grad,

Miranda

et al. 2025

American Journal of Ophthalmology

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A review of patient-reported outcome measures used in uveitis

Cited by 7 publications

References 155 publications

Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits

Online support group for patients with inflammatory eye disease: Characterisation of members and assessment of benefits

Piloting Rasch model scoring of the National Eye Institute Visual Function Questionnaire in uveitis

Humanistic Burden of Noninfectious Uveitis: A Systematic Review and Meta-Analysis

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