[HTML][HTML] The impact of low vision on social function: The potential importance of lost visual social cues

S Klauke, C Sondocie, I Fine - Journal of Optometry, 2023 - Elsevier
Visual cues usually play a vital role in social interaction. As well as being the primary cue for
identifying other people, visual cues also provide crucial non-verbal social information via …

Beyond the NEI-VFQ: recent experience in the development and utilization of patient-reported outcomes for inherited retinal diseases

T Durham, J Banhazi… - Cold Spring …, 2023 - perspectivesinmedicine.cshlp.org
Patient-reported outcome measures (PROMs) are tools designed to capture how a patient
feels or functions, without the input or interpretation of anyone else. The earliest PROMs …

Therapeutic landscape for inherited ocular diseases: Current and emerging therapies

HW Chan, J Oh, B Leroy - Singapore medical journal, 2023 - journals.lww.com
Inherited ocular diseases comprise a heterogeneous group of rare and complex diseases,
including inherited retinal diseases (IRDs) and inherited optic neuropathies. Recent success …

Construct Validity of Inherited Retinal Disease–Specific Patient-Reported Outcome Measures

KT Jayasundera, RO Abuzaitoun, L Popova… - American journal of …, 2023 - Elsevier
PURPOSE To evaluate aspects of construct validity of the Michigan Retinal Degeneration
Questionnaire (MRDQ) and the Michigan Vision-related Anxiety Questionnaire (MVAQ) …

Gene therapy: perspectives from young adults with Leber's congenital amaurosis

MP Napier, K Selvan, RZ Hayeems, C Shuman… - Eye, 2022 - nature.com
Abstract Aims/purpose To investigate Leber congenital amaurosis (LCA) patients'
expectations, decision-making processes and gene therapy-related concerns. Methods …

Self-reported visual function and psychosocial impact of visual loss in EYS-associated retinal degeneration in a Portuguese population

JP Marques, R Machado Soares, S Simão… - Ophthalmic …, 2023 - Taylor & Francis
Purpose To evaluate self-reported visual function and the psychosocial impact of visual loss
EYS-associated retinal degeneration (EYS-RD) using two patient-reported outcome (PRO) …

The state of patient-reported outcome measures for pediatric patients with inherited retinal disease

K Selvan, MF Abalem, GD Lacy, A Vincent… - Ophthalmology and …, 2022 - Springer
Patient-reported outcome measures (PROMs) are questionnaires that assess health
outcomes meaningful to the patient. PROMs have multiple applications, such as supporting …

Exploring self-reported visual function and vision-related anxiety in patients with RPGR-associated retinal degeneration

N Gouveia, O Chukwunalu, C Oliveira, CH Alves… - Scientific Reports, 2024 - nature.com
Variants in the retinitis pigmentosa GTPase regulator (RPGR) gene are responsible for the
majority of X-linked retinitis pigmentosa cases, which not only affects male patients but also …

Effects of duration and number of symptoms on vision-related anxiety in patients with Inherited Retinal Diseases

LT Popova, RO Abuzaitoun, MF Abalem… - Ophthalmic …, 2023 - Taylor & Francis
ABSTRACT Background Patients with Inherited Retinal Diseases (IRDs) are at increased
risk for vision-related anxiety due to progressive and irreversible vision loss, yet little is …

Portuguese translation and linguistic validation of the Michigan Retinal Degeneration Questionnaire and the Michigan Vision-Related Anxiety Questionnaire in a …

JP Marques, L Bernardes, C Oliveira… - Ophthalmic …, 2022 - Taylor & Francis
Inherited retinal degenerations (IRDs) are among the most important causes of severe visual
impairment and blindness in children and young adults in developed countries (1, 2), thus …