{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T22:18:52Z","timestamp":1790893132763,"version":"4.1.0"},"reference-count":13,"publisher":"Wiley","issue":"10","license":[{"start":{"date-parts":[[2006,10,17]],"date-time":"2006-10-17T00:00:00Z","timestamp":1161043200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancer"],"published-print":{"date-parts":[[2006,11,15]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>BACKGROUND.<\/jats:title>\n                    <jats:p>Cutaneous T\u2010cell lymphoma (CTCL) can have a profound impact on a patient's health\u2010related quality of life; however, little is known about its actual impact. The authors evaluated patients' perspectives on the impact of CTCL on physical functioning, lifestyle, emotional well being, and satisfaction with treatment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS.<\/jats:title>\n                    <jats:p>A 4\u2010page, self\u2010administered questionnaire was mailed and made available online in March 2005 to the entire United States membership of the Mycosis Fungoides Foundation (n = 930 members). Outcome measures were patients' perspectives on the psychosocial impact of CTCL and the management of their disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS.<\/jats:title>\n                    <jats:p>The response rate was 68%, and 93.6% of respondents were white. The majority of respondents had mycosis fungoides (89%). Respondents were bothered by skin redness (94%) and by the extent of symptoms that affected their choice of clothing (63%). For most patients, the disease had a functional impact, rendering them tired or affecting their sleep. Health distress was reported by almost all respondents, with 94% reporting that they worried about the seriousness of their disease and 80% worrying about dying from the disease. Sixty\u2010two percent of respondents reported that their disease made them feel unattractive, 85% reported that their treatment made their disease seem more manageable, but 61% reported that they felt burdened financially by their disease.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS.<\/jats:title>\n                    <jats:p>The high response rate and patients' responses to the survey provided compelling evidence that patients believed CTCL had a profound and severe impact on their functioning, emotional, and social well being. A striking health distress was prevalent in almost all respondents. Although the majority of patients reported that treatments made their disease more manageable, a significant proportion reported that they felt burdened financially by their disease. Cancer 2006. \u00a9 2006 American Cancer Society.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/cncr.22252","type":"journal-article","created":{"date-parts":[[2006,10,17]],"date-time":"2006-10-17T16:59:55Z","timestamp":1161104395000},"page":"2504-2511","source":"Crossref","is-referenced-by-count":163,"title":["Significant impact of cutaneous T\u2010cell lymphoma on patients' quality of life"],"prefix":"10.1002","volume":"107","author":[{"given":"Marie\u2010France","family":"Demierre","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Gan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judy","family":"Jones","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Donald R.","family":"Miller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2006,11,8]]},"reference":[{"key":"e_1_2_6_2_2","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMra032810"},{"key":"e_1_2_6_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0889-8588(03)00111-4"},{"key":"e_1_2_6_4_2","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.141.3.325"},{"key":"e_1_2_6_5_2","article-title":"HRQOL measures in cutaneous T\u2010cell lymphoma patients undergoing therapy with Bexarotene and extracorporeal photopheresis","author":"Demierre MF","journal-title":"Arch Dermatol."},{"key":"e_1_2_6_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0889-8588(18)30056-X"},{"key":"e_1_2_6_7_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2133.2005.06565.x"},{"key":"e_1_2_6_8_2","doi-asserted-by":"publisher","DOI":"10.1001\/archderm.139.6.752"},{"key":"e_1_2_6_9_2","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2133.2002.04622.x"},{"key":"e_1_2_6_10_2","first-page":"2:222","article-title":"Quality\u2010of\u2010life improvements in cutaneous T\u2010cell lymphoma patients treated with denileukin diftitox (ONTAK)","author":"Duvic M","year":"2002","journal-title":"Clin Lymphoma."},{"key":"e_1_2_6_11_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.0022-202X.2005.23796.x"},{"key":"e_1_2_6_12_2","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/95.4.263"},{"key":"e_1_2_6_13_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.1988.03410010050033"},{"key":"e_1_2_6_14_2","unstructured":"U.S. Food and Drug Administration.Guidance for industry\u2014patient\u2010reported outcome measures: use in medical product development to support labeling claims. Available at:http:\/\/www.fda.gov\/cder\/guidance\/5460dft.pdf(accessed May 10 2006)."}],"container-title":["Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1002%2Fcncr.22252","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/acsjournals.onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/cncr.22252","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,12]],"date-time":"2025-10-12T18:25:34Z","timestamp":1760293534000},"score":1,"resource":{"primary":{"URL":"https:\/\/acsjournals.onlinelibrary.wiley.com\/doi\/10.1002\/cncr.22252"}},"subtitle":["Results of a 2005 National Cutaneous Lymphoma Foundation Survey"],"short-title":[],"issued":{"date-parts":[[2006,11,8]]},"references-count":13,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2006,11,15]]}},"alternative-id":["10.1002\/cncr.22252"],"URL":"https:\/\/doi.org\/10.1002\/cncr.22252","archive":["Portico"],"relation":{},"ISSN":["0008-543X","1097-0142"],"issn-type":[{"value":"0008-543X","type":"print"},{"value":"1097-0142","type":"electronic"}],"subject":[],"published":{"date-parts":[[2006,11,8]]}}}