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An investigation reveals that as patients' XLRP severity increases, carer quality of life decreases, implying significant emotional and social challenges for carers.
Mean 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.
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Durno et al. (2026) studied this question.
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