ArticleJournal of patient-reported outcomes2017
Exploring the quality of life issues in people with retinal diseases: a qualitative study.
Article in Journal of patient-reported outcomes, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 44 citations in OpenAlex.
- Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life.BMC ophthalmology · 2019Pooled it
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- Patient-Reported Quality of Life and Treatment Experiences Among Patients with Neovascular Age-Related Macular Degeneration Receiving Intravitreal Aflibercept in Colombia: A Qualitative Study.Clinical ophthalmology (Auckland, N.Z.) · 2026Article
- The Amsler Grid in Everyday Practice: A Review of Its Role and Limitations in Primary Care.Clinical ophthalmology (Auckland, N.Z.) · 2026Review
- Involving Patients in Developing a Patient-Reported Outcome Measure for Retinal Detachment.Ophthalmology science · 2026Article
- The impact of vitreous floaters on quality of life: a qualitative study.Journal of patient-reported outcomes · 2025Article
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- A review of the 661W cell line as a tool to facilitate treatment development for retinal diseases.Cell & bioscience · 2025Review
- To Treat or Not to Treat? Resolving the Question of Subretinal and Intraretinal Fluid in Age-Related Macular Degeneration: A Narrative Review.Ophthalmology and therapy · 2025Review
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- The European Voice of the Patient living with pulmonary hypertension associated with interstitial lung disease: Diagnosis, symptoms, impacts, and treatments.Pulmonary circulation · 2024Article
- Multi-Fundus Diseases Classification Using Retinal Optical Coherence Tomography Images with Swin Transformer V2.Journal of imaging · 2023Article
- Current Assistive Devices Usage and Recommendations for a Future Artificial Vision Prosthesis among Patients with Severe Visual Impairment Due to Inherited Retinal Diseases.Journal of clinical medicine · 2023Article
- Bibliometric Analysis of Ophthalmic Journals.JAMA ophthalmology · 2023Article
- Impact of an immersive, interactive medical education initiative on guideline-based retinal disease management knowledge/competence and effectual practice change.BMC ophthalmology · 2023Article
- Beyond the NEI-VFQ: Recent Experience in the Development and Utilization of Patient-Reported Outcomes for Inherited Retinal Diseases.Cold Spring Harbor perspectives in medicine · 2023Review
- Article
- Medical student acceptance on gene therapy to increase children's well-being with genetic diseases: a study in Indonesia.Future science OA · 2022Article
- The Role of Inflammation in Retinal Neurodegeneration and Degenerative Diseases.International journal of molecular sciences · 2021Review
- LEBER CONGENITAL AMAUROSIS DUE TO CEP290 MUTATIONS-SEVERE VISION IMPAIRMENT WITH A HIGH UNMET MEDICAL NEED: A Review.Retina (Philadelphia, Pa.) · 2021Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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 (
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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.