ArticleAdvances in therapy2026
X-Linked Retinitis Pigmentosa (XLRP): An Investigation of the Impact of XLRP on Health-Related Quality of Life of Carers in Great Britain.
Article in Advances in therapy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
- Erratum issued
Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionX-linked retinitis pigmentosa (XLRP) is one of the most severe forms of retinitis pigmentosa, representing 5-15% of all cases. There is a notable gap in understanding the health-related quality of life (HRQoL) impact on carers of people with XLRP, essential for holistic health economic evaluations. The objective of the study is to estimate health state utilities of informal carers for a person with XLRP which can be used in economic modelling.
methodFour carer descriptions or "vignettes" were developed for mild, moderate, severe, and completely blind XLRP patient care. The vignettes were based on studies identified in a targeted literature review and validated through qualitative interviews with informal carers and an ophthalmologist. The vignettes were valued using the time trade-off (TTO) method by the general population of Great Britain. Descriptive statistics of the data were analysed.
resultsA total of 220 respondents completed the survey. The mean utility value for providing care to someone with mild XLRP was 0.85, decreasing to 0.76 when caring for someone with moderate XLRP and further decreasing to 0.54 when caring for someone with severe XLRP. The mean carer utility declined to 0.42 for complete blindness.
conclusionMean carer utility declined with increased severity of patient XLRP with the most substantial decline calculated when moving from moderate to severe XLRP. This is the first study to generate utility values reflecting HRQoL of carers of patients with XLRP, by different levels of disease severity, and finds that carer utility decreases with increased XLRP severity in patients.
Indexed as
Identifiers
What Socratic 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 Socratic graph.