Exploring the quality of life issues in people with retinal diseases: a qualitative study

Journal of Patient-reported Outcomes
Mallika Prem SenthilKonrad Pesudovs

Abstract

The lack of an appropriate retina-specific patient-reported outcome instrument restricts the understanding of the full impact of hereditary retinal diseases and other less common but potentially blinding acquired retinal diseases such as, vascular occlusions, epiretinal membrane, macular hole, central serous retinopathy and other vitreoretinopathies on quality of life. This study aims to explore the quality of life issues in people with hereditary retinal diseases and acquired retinal diseases to develop disease-specific patient-reported outcome instruments. A qualitative research methodology to understand the lived experiences of people with retinal diseases was carried out. Data were collected through semistructured interviews. The coding, aggregation and theme development was carried out using the NVivo -10 software. Seventy-nine interviews were conducted with participants with hereditary retinal diseases (n = 32; median age = 57 years) and acquired retinal diseases (n = 47; median age = 73 years). We identified nine quality of life themes (domains) relevant to people with retinal diseases. Difficulty in performing important day-to-day activities (activity limitation) was the most prominent quality of life issue in the hered...Continue Reading

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Citations

Dec 21, 2018·Optometry and Vision Science : Official Publication of the American Academy of Optometry·Mallika Prem SenthilKonrad Pesudovs
Jun 24, 2020·Ophthalmic Genetics·Gabrielle D LacyK Thiran Jayasundera
May 8, 2018·Graefe's Archive for Clinical and Experimental Ophthalmology = Albrecht Von Graefes Archiv Für Klinische Und Experimentelle Ophthalmologie·Mallika Prem SenthilKonrad Pesudovs
Jan 30, 2019·Clinical & Experimental Optometry : Journal of the Australian Optometrical Association·Mallika Prem SenthilKonrad Pesudovs
Oct 17, 2019·Ophthalmic Epidemiology·Mallika Prem SenthilKonrad Pesudovs
Dec 22, 2020·Ophthalmic Epidemiology·Mallika Prem SenthilKonrad Pesudovs
Apr 10, 2021·Ophthalmic & Physiological Optics : the Journal of the British College of Ophthalmic Opticians (Optometrists)·Amithavikram R HathibelagalJohn L Barbur
Sep 26, 2021·Ophthalmology. Glaucoma·Lachlan S W KnightEmmanuelle Souzeau

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