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Gene therapies for XLRP are under investigation, and health state utilities are needed for use in cost-utility analyses examining the value of these treatments.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Objective<\/jats:title>\n            <jats:p>This study aimed to estimate utilities associated with XLRP severity.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>Eleven health state vignettes depicting combinations of impairment in visual field and visual acuity associated with XLRP were developed based on literature review and input from clinicians, patients, and a caregiver. Vignettes included text describing visual acuity impairment, visual field impairment, night blindness, impact on quality of life, and two images representing the combination of visual field and visual acuity impairment for each health state. Health states were valued in time trade-off interviews with general population respondents in the UK.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>A total of 245 participants completed interviews (51.0% female; mean age\u2009=\u200941.4 years; Newcastle, <jats:italic>n<\/jats:italic>\u2009=\u200980; London, <jats:italic>n<\/jats:italic>\u2009=\u200985; Edinburgh, <jats:italic>n<\/jats:italic>\u2009=\u200980). In a ranking task, participants preferred health states with less severe visual impairment, and this preference was reflected in the utilities. Mean (standard deviation) utilities ranged from 0.900 (0.121) for the health state with no visual acuity impairment and mild visual field impairment to 0.271 (0.478) for the health state describing blindness.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusion<\/jats:title>\n            <jats:p>Results highlight the substantial impact of visual impairment on health state preference and quality of life. The health state utilities estimated in this study may be appropriate for use in cost-effectiveness models evaluating treatments for XLRP.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>JEL CLASSIFICATION CODES<\/jats:title>\n            <jats:p>I1; I12; I19<\/jats:p>\n          <\/jats:sec>","DOI":"10.1007\/s10198-025-01761-y","type":"journal-article","created":{"date-parts":[[2025,3,17]],"date-time":"2025-03-17T04:58:58Z","timestamp":1742187538000},"page":"1263-1273","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Health state utilities associated with X-linked retinitis pigmentosa (XLRP)"],"prefix":"10.1007","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6374-5948","authenticated-orcid":false,"given":"Louis S.","family":"Matza","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nan","family":"Li","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katie D.","family":"Stewart","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mahmoud","family":"Hashim","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom","family":"Denee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Feng","family":"Pan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Qiaoyi","family":"Zhang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Lee","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michel","family":"Michaelides","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hendrik P. 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Participants provided informed consent before starting interview procedures, and the study was approved by an independent institutional review board (Ethical & Independent Review Services; Study Number 22020-01).","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical standards and informed consent"}},{"value":"The coauthors employed by Janssen Pharmaceuticals contributed to the study design, health state development, interpretation of data, critical review of the manuscript, supervision, and decision to submit the manuscript for publication.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Role of the funder\/sponsor"}},{"value":"NL, MH, TD, FP, QZ, and JL are employees of Janssen Pharmaceuticals. LM and KS are employed by Evidera, a company that received funding from Janssen Pharmaceuticals for time spent conducting this research. MM has received payment for consultation to Janssen Pharmaceuticals and MeiraGTx. MM was supported by the National Institute for Health and Care Research (NIHR) Biomedical Research Centre based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care. HS is supported by the Swiss National Science Foundation (Project funding: \u201cDeveloping novel outcomes for clinical trials in Stargardt disease using structure\/function relationship and deep learning\u201d #310030_201165), the Wellcome Trust (PINNACLE study), and the Foundation Fighting Blindness Clinical Research Institute (ProgStar study). HS is chief medical officer of Belite Bio and director of Bioptima AG. HS is a member of the Scientific Advisory Board of the following: Boehringer Ingelheim Pharma GmbH & Co, Janssen Research & Development, LLC (J&J Innovative Medicine), Kerna Ventures, Okuvision GmbH, and Tenpoint Therapeutics. HS is a member of the Investment Advisory Board of Droia NV. HS is a member of the Data Monitoring and Safety Board\/Committee of ViGeneron (NCT06291935) and an adviser of the Steering Committee of Novo Nordisk (FOCUS trial; NCT03811561).","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}