{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,13]],"date-time":"2026-07-13T11:19:45Z","timestamp":1783941585520,"version":"3.55.0"},"reference-count":46,"publisher":"American Society of Hematology","issue":"12","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2025,3,20]]},"abstract":"<jats:sec>\n                  <jats:title>Abstract<\/jats:title>\n                  <jats:p>Sclerosis is a highly morbid manifestation of chronic graft-versus-host disease (cGVHD), associated with distressing symptoms and significant long-term disability. A patient-reported outcome (PRO) measure for cGVHD-associated sclerosis is essential to advance therapeutic trials. We aimed to develop a PRO for adults with cGVHD-associated sclerosis and evaluate and refine its content validity. Adults aged \u226518 years with cGVHD-associated sclerosis participated in semistructured interviews to identify salient symptoms and functions. Sclerosis-relevant symptoms and functions from existing PROs were also used to prompt discussion of topics not spontaneously mentioned. Symptoms and functions (subcodes) of importance were clustered and mapped to overarching domains (codes) using inductive analysis, and candidate items were developed. Cognitive interviews were used to evaluate content validity of the items, response options, recall period, and respondent instructions. Thirty-six open-ended interviews, conducted to saturation, revealed the breadth of the patient experience with cGVHD-associated sclerosis including 5 overarching domains: (1) skin changes, (2) symptoms, (3) emotional and social functioning, (4) mobility restrictions, and (5) activity limitations. A pool of 54 items was tested and iteratively refined through cognitive debriefing interviews (n\u00a0=\u00a025). Phrasing changes were made to improve relevance and comprehension. One item was removed, and 2 items were added to address respondent feedback, resulting in 55 items. Results support the relevance, comprehensibility, and comprehensiveness of the provisional Lee Symptom Scale\u2013Skin Sclerosis. Concept elicitation and cognitive interviewing have informed the development of the Lee Symptom Scale\u2013Skin Sclerosis. Psychometric testing and determination of minimal clinically important differences are underway in an external cohort to validate the PROs.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1182\/blood.2024027334","type":"journal-article","created":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T21:57:09Z","timestamp":1736891829000},"page":"1321-1332","update-policy":"https:\/\/doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":8,"title":["Development of the Lee Symptom Scale\u2013Skin Sclerosis for chronic GVHD\u2013associated sclerosis"],"prefix":"10.1182","volume":"145","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0396-2005","authenticated-orcid":false,"given":"Emily","family":"Baumrin","sequence":"first","affiliation":[{"name":"1Department of Dermatology, University of Pennsylvania, Philadelphia, PA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joseph","family":"Pidala","sequence":"additional","affiliation":[{"name":"2Department of Blood and Marrow Transplantation and Cellular Immunotherapy, Moffitt Cancer Center and Research Institute, Tampa, FL"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4153-9972","authenticated-orcid":false,"given":"Sandra A.","family":"Mitchell","sequence":"additional","affiliation":[{"name":"3Division of Cancer Control and Population Sciences, Outcomes Research Branch, Healthcare Delivery Research Program, National Cancer Institute, Rockville, MD"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0039-7143","authenticated-orcid":false,"given":"Lynn","family":"Onstad","sequence":"additional","affiliation":[{"name":"4Clinical Research Division, Fred Hutchinson Cancer Center and Department of Medicine, University of Washington, Seattle, WA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2600-6390","authenticated-orcid":false,"given":"Stephanie J.","family":"Lee","sequence":"additional","affiliation":[{"name":"4Clinical Research Division, Fred Hutchinson Cancer Center and Department of Medicine, University of Washington, Seattle, WA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"234","reference":[{"issue":"26","key":"2025032015213092900_bib1","doi-asserted-by":"crossref","first-page":"2565","DOI":"10.1056\/NEJMra1703472","article-title":"Pathophysiology of chronic graft-versus-host disease and therapeutic targets","volume":"377","author":"Zeiser","year":"2017","journal-title":"N\u00a0Engl J Med"},{"issue":"3","key":"2025032015213092900_bib2","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1016\/j.bbmt.2017.10.042","article-title":"Success of immunosuppressive treatments in patients with chronic graft-versus-host 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