{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,9]],"date-time":"2026-09-09T10:37:46Z","timestamp":1788950266195,"version":"build-2803163510"},"reference-count":19,"publisher":"Oxford University Press (OUP)","issue":"1","license":[{"start":{"date-parts":[[2024,7,30]],"date-time":"2024-07-30T00:00:00Z","timestamp":1722297600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"name":"Michael Piepkorn Endowed Chair in Dermatology Research"},{"name":"Merkel Cell Carcinoma Gift Fund"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,12,23]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Patients with mycosis fungoides (MF)\/S\u00e9zary Syndrome (SS) can experience impacted health-related quality of life (HRQoL).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>To validate the CTCL-S, a novel subscale of the Functional Assessment of Cancer Therapy\u2013General (FACT-G), in patients with MF\/SS.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Qualitative interviews were conducted with expert clinicians and patients with MF\/SS. Thematic analysis identified the most common concerns, and 19 items were selected. Patients with MF\/SS were recruited from a single centre. FACT-G, CTCL-S (collectively \u2018FACT-CTCL\u2019), Skindex-29 and Visual Analogue Scale\u2013Pruritis (VAS-itch) were administered. A subset repeated FACT-CTCL and VAS-itch after \u22482 weeks. Patient demographics and clinical characteristics were obtained via review of the electronic medical records. Psychometric properties were assessed. Internal consistency was estimated using Cronbach\u2019s \u03b1. Convergent and discriminant validity were assessed by comparing CTCL-S with disease stage, age, VAS-itch, FACT-G and Skindex-29. Exploratory factor analysis (EFA) was used to preliminarily assess CTCL-S dimensionality. Test\u2013retest repeatability was summarized using intraclass correlation coefficient (ICC), within-subject standard deviation and within-subject coefficient of variation.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Seventy-two patients completed the initial survey, and 35 repeated the FACT-CTCL and VAS-itch after \u22482 weeks. Two-thirds were men; most were White (78%). The majority (85%) had MF, 15% had SS and 75% early (stage IA\u2013IIA) and 25% advanced (\u2265 stage IIB) disease. Preliminary EFA found a single predominant factor, supporting a hypothesis of unidimensionality of the CTCL-S. Internal consistency of the CTCL-S was high, with \u03b1 = 0.95 [95% confidence interval (CI) 0.93\u20130.96]. There was no significant change in CTCL-S average test\u2013retest scores [ICC 0.93 (P = 0.63)]. CTCL-S was significantly lower in advanced vs. early-stage disease [median (interquartile range) 34 (26\u201348) vs. 59 (44\u201368), P &amp;lt; 0.001] and strongly correlated with VAS-itch [Spearman\u2019s r (rs) \u20130.70, 95% CI \u20130.81 to \u20130.55], FACT-G (rs 0.77, 95% CI 0.65\u20130.85) and Skindex-29 (rs \u20130.90, 95% CI \u20130.94 to \u20130.84), supporting convergent validity. CTCL-S scores had little correlation with age (rs 0.19, 95% CI \u20130.05 to 0.41, P = 0.12), supporting discriminant validity.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>The FACT-CTCL is a disease-specific instrument for assessing HRQoL with high reproducibility and good performance in a cohort of patients with MF\/SS.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/bjd\/ljae308","type":"journal-article","created":{"date-parts":[[2024,7,31]],"date-time":"2024-07-31T01:10:48Z","timestamp":1722388248000},"page":"78-84","source":"Crossref","is-referenced-by-count":3,"title":["Development and psychometric properties of the Functional Assessment of Cancer Therapy\u2013Cutaneous T-Cell Lymphoma (FACT-CTCL) instrument"],"prefix":"10.1093","volume":"192","author":[{"given":"Caroline","family":"Raymundo","sequence":"first","affiliation":[{"name":"University of Washington School of Medicine , Seattle, WA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9881-4541","authenticated-orcid":false,"given":"David","family":"Cella","sequence":"additional","affiliation":[{"name":"Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine , Chicago, IL ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lynne I","family":"Wagner","sequence":"additional","affiliation":[{"name":"Department of Health Policy and Management, University of North Carolina , Chapel Hill, NC ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel S","family":"Hippe","sequence":"additional","affiliation":[{"name":"Fred Hutchinson Cancer Center , Seattle, WA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6165-2617","authenticated-orcid":false,"given":"Mengyang","family":"Di","sequence":"additional","affiliation":[{"name":"Fred Hutchinson Cancer Center , Seattle, WA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joan","family":"Guitart","sequence":"additional","affiliation":[{"name":"Northwestern University Department of Dermatology , Chicago, IL ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steven T","family":"Rosen","sequence":"additional","affiliation":[{"name":"Department of Hematology and Hematopoietic Cell Transplantation, City of Hope Comprehensive Cancer Center and Beckman Research Institute , Duarte, CA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9698-5809","authenticated-orcid":false,"given":"Christiane","family":"Querfeld","sequence":"additional","affiliation":[{"name":"Division of Dermatology, City of Hope Comprehensive Cancer Center and Beckman Research Institute , Duarte, CA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michi M","family":"Shinohara","sequence":"additional","affiliation":[{"name":"Fred Hutchinson Cancer Center , Seattle, WA ,","place":["USA"]},{"name":"University of Washington Department of Dermatology , Seattle, WA ,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2024,7,30]]},"reference":[{"key":"2024122223520574600_ljae308-B1","doi-asserted-by":"crossref","first-page":"3768","DOI":"10.1182\/blood-2004-09-3502","article-title":"WHO-EORTC classification for cutaneous lymphomas","volume":"105","author":"Willemze","year":"2005","journal-title":"Blood"},{"key":"2024122223520574600_ljae308-B2","doi-asserted-by":"crossref","first-page":"223.e1","DOI":"10.1016\/j.jaad.2013.08.033","article-title":"Primary cutaneous T-cell lymphoma (mycosis fungoides and Sezary syndrome): part II. 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