ArticleJournal of market access & health policy2026
Health-Related Quality of Life of Patients with
Article in Journal of market access & health policy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
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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.
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEpidermolysis bullosa (EB) is a complex group of rare, inherited skin disorders that blister easily, imposing substantial burden on patients and carers. There is a lack of published evidence in the UK quantifying health-related quality of life in EB patients and carers as utility values suitable for use in Health Technology Assessment (HTA).
methodsA time trade-off (TTO) study was conducted with 120 UK general public members to estimate utility values for EB patient and primary carer vignettes depicting varying EB severity. An exploratory sub-study involving six carer and clinical experts was conducted to estimate utility values of second carers.
results115 general public participants were included in the final TTO analysis. Mean utility values declined as disease severity increased, from 0.82 in the least severe state, to 0.54 in the most severe. Carer utilities were higher than the equivalent patient health states, but with a similar pattern of decreasing utility with increasing EB severity, ranging from 0.85 to 0.64. The secondary carer sub-study, in six respondents estimated a second care burden factor relative to the primary carer of 77%.
conclusionsThe utilities estimated for both EB patients and their carers have relevance for future economic evaluations and HTA of new EB therapies.
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