X-Linked Retinitis Pigmentosa (XLRP): An Investigation of the Impact of XLRP on Health-Related Quality of Life of Carers in Great Britain

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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Publication Details

Journal
Advances in Therapy
Published
2026-02-13
DOI
https://doi.org/10.1007/s12325-025-03485-0
Primary Topic
Ocular Diseases and Behçet’s Syndrome
Type
article
Field-Weighted Citation Impact
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article

X-Linked Retinitis Pigmentosa (XLRP): An Investigation of the Impact of XLRP on Health-Related Quality of Life of Carers in Great Britain

Krystallia Pantiri, Nicholas Durno, Katalin Pungor, Salla Oinasmaa et al.
Advances in Therapy
Ocular Diseases and Behçet’s Syndrome
article

X-Linked Retinitis Pigmentosa (XLRP): An Investigation of the Impact of XLRP on Health-Related Quality of Life of Carers in Great Britain

Krystallia Pantiri, Nicholas Durno, Katalin Pungor, Salla Oinasmaa, Debdeep Chattopadhyay, Tom R. Denee, Khalid Siddiqui, Kate R. Arkell
article en

Abstract

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.

Advances in Therapy
Johnson & Johnson (United States) (US), The Open Group (GB), Open Geospatial Consortium (GB), Open Evidence (ES), Johnson & Johnson (United Kingdom) (GB), Johnson & Johnson (Netherlands) (NL), Johnson & Johnson (India) (IN), Open University of the Netherlands (NL), University of Buckingham (GB)
Openalex Percentile: Top 55%
Ocular Diseases and Behçet’s Syndrome
DOIOpen Access PDFOpenAlex
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X-Linked Retinitis Pigmentosa (XLRP): An Investigation of the Impact of XLRP on Health-Related Quality of Life of Carers in Great Britain — Krystallia Pantiri, Nicholas Durno, et al. · Advances in Therapy (2026) | TGRS Research Map | TGRS