SynthesisBMC ophthalmology2019
Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life.
Synthesis in BMC ophthalmology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Efficacy and safety of AAV RPGR gene therapy in X-linked retinitis pigmentosa: a systematic review and meta-analysis.Journal of translational medicine · 2026Pooled it
- A national cross-sectional study of patients with inherited retinal disease in China.Scientific reports · 2026Article
- Real-World Comparison of Overall Survival Among Patients With and Without Inherited Retinal Diseases.Vision (Basel, Switzerland) · 2026Article
- Living with Retinitis Pigmentosa in Türkiye: Diagnosis, Independence, and Access to Care.Healthcare (Basel, Switzerland) · 2026Article
- Leveraging large scale deep learning models for diagnosis and visual outcome prediction in retinitis pigmentosa.NPJ digital medicine · 2026Article
- Article
- The incidence of visual impairment due to retinitis pigmentosa has declined in Finland over the last 40 years.Acta ophthalmologica · 2025Article
- 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
- Pigmentary retinal dystrophy associated with peroxisome biogenesis disorder-Zellweger syndrome spectrum.Oxford medical case reports · 2024Article
- Bridging the gap of vision restoration.Frontiers in cellular neuroscience · 2024Review
- Attitudes of employers towards people with visual impairment: a scoping review.Frontiers in rehabilitation sciences · 2024Article
- Article
- Retinitis Pigmentosa: Burden of Disease and Current Unmet Needs.Clinical ophthalmology (Auckland, N.Z.) · 2022Article
- The Michigan Vision-Related Anxiety Questionnaire: A Psychosocial Outcomes Measure for Inherited Retinal Degenerations.American journal of ophthalmology · 2021Article
- Care Pathway of RPE65-Related Inherited Retinal Disorders from Early Symptoms to Genetic Counseling: A Multicenter Narrative Medicine Project in Italy.Clinical ophthalmology (Auckland, N.Z.) · 2021Article
- The Burden of X-Linked Retinitis Pigmentosa on Patients and Society: A Narrative Literature Review.ClinicoEconomics and outcomes research : CEOR · 2021Review
- The Impact of Inherited Retinal Diseases in the Republic of Ireland (ROI) and the United Kingdom (UK) from a Cost-of-Illness Perspective.Clinical ophthalmology (Auckland, N.Z.) · 2020Review
- The impact of low vision on social function: The potential importance of lost visual social cues.Journal of optometryReview
- Vision-Related Quality of Life in Patients with Inherited Retinal Dystrophies.Journal of current ophthalmologyArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRetinitis pigmentosa (RP) are a group of incurable and inherited eye conditions, and the leading cause of inherited blindness in people under the age of 60. The aim of this systematic review and meta-synthesis was to present a comprehensive overview of qualitative papers on experiences and coping strategies of adults living with RP, and how these influence quality of life.
methodsA pre-registered search strategy was applied in nine databases and 12 articles met eligibility criteria. Studies included were from Australia, Brazil, Ireland, Netherlands, Republic of Korea, United Kingdom, and USA. The overall sample was based on 126 people with RP (ages ranging from 18 to 85; at least 65 female). Principles of meta-ethnography were used to synthesise the articles revealing five higher-level meta-themes.
resultsThe five higher-level meta-themes were, 1) managing identity: making sense of RP, managing autonomy and independence; 2) living with RP: practical and emotional issues; 3) experiences with healthcare professionals and other social support; 4) adaptive and maladaptive coping strategies; and 5) impact of RP on work and career. A conceptual model was developed by grouping higher-level meta-themes as intra- and inter-individual factors and how they may be implicated with coping strategies and quality of life.
conclusionsThis review established factors that can be explored as potential psychosocial influences in the relationship between coping strategies and quality of life in people with RP. Further understanding of these factors and mechanisms can help inform intervention development to support adaptive coping in living with RP and positively impact quality of 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.