BACKGROUND: Cutaneous T-cell lymphoma (CTCL) can have a profound impact on a patient's health-related 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. METHODS: A 4-page, self-administered 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. RESULTS: 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-two 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. CONCLUSIONS: 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.
BACKGROUND:Cutaneous T-cell lymphoma (CTCL) can have a profound impact on a patient's health-related 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. METHODS: A 4-page, self-administered 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. RESULTS: 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-two 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. CONCLUSIONS: 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.
Authors: Jaxon J Vallely; Kathryn E Hudson; Susan C Locke; Steven P Wolf; Gregory P Samsa; Amy P Abernethy; Thomas W LeBlanc Journal: Support Care Cancer Date: 2019-02-14 Impact factor: 3.603
Authors: Xochiquetzal U Martinez; Arnab Chowdhury; Tracey Stiller; Joycelynne Palmer; Matthew Loscalzo; Estella Barrios; Farah R Abdulla; Jasmine Zain; Steven T Rosen; Christiane Querfeld Journal: Support Care Cancer Date: 2021-05-07 Impact factor: 3.603
Authors: P Quaglino; H M Prince; R Cowan; M Vermeer; E Papadavid; M Bagot; O Servitjie; E Berti; E Guenova; R Stadler; C Querfeld; A M Busschots; E Hodak; A Patsatsi; J Sanches; M Maule; J Yoo; M Kevin; P Fava; S Ribero; L Zocchi; M Rubatto; M T Fierro; U Wehkamp; M Marshalko; C Mitteldorf; O Akilov; P Ortiz-Romero; T Estrach; L Vakeva; P A Enz; M Wobser; M Bayne; C Jonak; M Rubeta; A Forbes; A Bates; M Battistella; R Amel-Kashipaz; B Vydianath; A Combalia; E Georgiou; E Hauben; E K Hong; M Jost; R Knobler; I Amitay-Laish; D Miyashiro; J Cury-Martins; X Martinez; C Muniesa; H Prag-Naveh; A Stratigos; V Nikolaou; K Quint; C Ram-Wolff; K Rieger; R Stranzenbach; Á Szepesi; S Alberti-Violetti; E Felicity; L Cerroni; W Kempf; S Whittaker; R Willemze; Y Kim; J J Scarisbrick Journal: Br J Dermatol Date: 2021-02-18 Impact factor: 9.302
Authors: R Ottevanger; S van Beugen; A W M Evers; R Willemze; M H Vermeer; K D Quint Journal: J Eur Acad Dermatol Venereol Date: 2021-08-14 Impact factor: 9.228
Authors: T S Bhat; C M Herbosa; A R Rosenberg; O Sogade; D B Jeffe; N Mehta-Shah; Y R Semenov; A C Musiek Journal: Br J Dermatol Date: 2020-08-02 Impact factor: 9.302