Abstract
BackgroundThe 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.MethodsA 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.ResultsSeventy-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 hereditary retinal diseases group whereas concerns about health, disease outcome and personal safety (health concerns) was the most prominent quality of life issue in the acquired retinal diseases group. Participants with hereditary retinal diseases had more issues with social interaction (social well-being), problems with mobility and orientation (mobility), and effect on work and finance (economic) than participants with acquired retinal diseases. On the contrary, participants with acquired retinal diseases reported more inconveniences (conveniences) than participants with hereditary retinal diseases, which were mostly attributed to treatment. Participants with hereditary retinal diseases were coping better compared to participants with acquired retinal diseases.ConclusionsOur study found that participants with both hereditary and acquired retinal diseases are living with myriad of disease-specific quality of life issues. Many of these issues are completely different and unique to each disease group. Hence, these group of diseases would need separate patient-reported outcome instruments to capture the disease-specific quality of life impacts.
Highlights
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
Seventy-nine semi-structured interviews were conducted with participants with hereditary retinal disease (n = 32) and acquired retinal diseases (n = 47)
The hereditary retinal diseases group comprised of retinitis pigmentosa (n = 23), cone dystrophy (n = 2) and macular dystrophy (n = 7) and the acquired retinal diseases group comprised of vascular occlusions (n = 18), epiretinal membrane (n = 20) and macular hole (n = 9)
Summary
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. Quality of life impacts in these retinal conditions are mostly assessed using non-disease-specific patient-reported outcome instruments (ophthalmic instruments that have been originally developed for other eye disease/s) and generic instruments (instruments developed for non-ocular diseases) [11,12,13,14,15,16,17]. The lack of an appropriate retinaspecific patient-reported outcome measure restricts our understanding of the full impact of these vitreoretinal diseases and their treatment on quality of life. Understanding patients’ perspective is critical as new treatment modalities such as anti-vascular endothelial growth factor intravitreal injections and gene therapy are gaining momentum especially for vascular occlusive diseases and hereditary degenerations
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