ArticleEye (London, England)2017
Seeing through their eyes: lived experiences of people with retinitis pigmentosa.
Article in Eye (London, England), 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 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
39 citing papers in PubMed, 1 synthesis or guideline pooled it, 67 citations in OpenAlex.
- Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life.BMC ophthalmology · 2019Pooled it
- Trial
- Enhanced Depth Navigation Through Augmented Reality Depth Mapping in Patients with Low Vision.Scientific reports · 2019Trial
- A national cross-sectional study of patients with inherited retinal disease in China.Scientific reports · 2026Article
- Photovoltaic Stimulation of Mouse and Pig Retina With Pyrolytic Carbon Microelectrodes Integrated on High-Density Silicon Solar Cell Arrays.Advanced healthcare materials · 2026Article
- Development of a patient journey map for diabetic retinopathy: exploring evidence from qualitative research.BMC health services research · 2026Article
- Valuing Maintenance of Visual Function in Retinitis Pigmentosa: A Discrete Choice Experiment with Patients and the General Public.PharmacoEconomics - open · 2026Article
- Living with Retinitis Pigmentosa in Türkiye: Diagnosis, Independence, and Access to Care.Healthcare (Basel, Switzerland) · 2026Article
- Quality of Life in Patients with Posterior Segment Eye Diseases.Journal of ophthalmic & vision research · 2026Review
- "I miss stars, too": a thematic analysis of the experiences of persons with retinitis pigmentosa using Reddit.Journal of community genetics · 2025Article
- The impact of vitreous floaters on quality of life: a qualitative study.Journal of patient-reported outcomes · 2025Article
- Patient experience in retinitis pigmentosa and Choroideremia- a concept elicitation study in 17 patients based on qualitative interviews.Orphanet journal of rare diseases · 2025Article
- Simulated prosthetic vision confirms checkerboard as an effective raster pattern for epiretinal implants.Journal of neural engineering · 2025Article
- Ultralow-threshold upconversion infrared vision via a microsphere-mediated directional photofield.Nature communications · 2025Article
- The burden of X-linked retinitis pigmentosa (XLRP) on patient experience and patient-reported outcomes (PROs): findings from the EXPLORE XLRP-2 study.Eye (London, England) · 2025Observational
- Regulatory aspects of optogenetic research and therapy for retinitis pigmentosa under EU law.Frontiers in medical technology · 2025Review
- Estimating Australian Population Utilities for Inherited Retinal Disease Using Time Trade-Off.PharmacoEconomics - open · 2024Article
- Impacts of X-linked Retinitis Pigmentosa and Patient Pathways in European Countries: Results from the Cross-sectional EXPLORE XLRP-1 Physician Survey.Advances in therapy · 2024Article
- Current Status of Clinical Trials Design and Outcomes in Retinal Gene Therapy.Cold Spring Harbor perspectives in medicine · 2024Review
- Development and Validation of the Low Vision Severely Constricted Peripheral Eyesight (LV-SCOPE) Questionnaire.American journal of ophthalmology · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
PurposeRetinitis pigmentosa (RP) is the most common retinal degeneration causing blindness. Although their clinical problems are amenable for the clinical diagnosis, their day-to-day problems for having to live with the disease are mostly unexplored. This study aims to explore and understand the issues and impact of people with RP on quality of life (QoL).MethodsA qualitative research methodology to facilitate the understanding of the experiences of people with RP was carried out. Data were collected through audio-recorded semi-structured interviews. Thematic analysis occurred through the process of line-by-line coding, aggregation, and theme development using the NVivo-10 software.ResultsTwenty-three interviews were conducted (mean age=56 years; females, 14). We identified five major QoL themes: (1) struggle to perform important day-to-day tasks; (2) concerns about disease progression, disease outcome and personal safety; (3) facing a lot of emotional and psychological challenges; (4) experiencing a myriad of visual symptoms; and (5) adopting different strategies to cope and manage stressful circumstances. Difficulty in performing important day-to-day tasks was the most prominent QoL issue among these people. Their major concerns were going blind and uncertainties about their future. They face a lot of emotional and psychological challenges to adapt to the physiological stress associated with the progressive vision loss. However, they adopt several coping strategies to manage the stressful circumstances.ConclusionsPeople with RP experience a myriad of QoL issues. Despite all the hardship, they remain optimistic and learn to accept their eye condition and move on in life.
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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.