Significant impact of cutaneous T-cell lymphoma on patients' quality of life: results of a 2005 National Cutaneous Lymphoma Foundation Survey.
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.
Demierre
Marie-France
MF
Department of Dermatology, Boston University School of Medicine, Boston, Massachusetts 02118, USA. mariefrance.demierre@bmc.org
Gan
Stephanie
S
Jones
Judy
J
Miller
Donald R
DR
D000222:Adaptation, Physiological; D000328:Adult; D000368:Aged; D005260:Female; D005582:Foundations / Q000458:organization & administration; D006304:Health Status; D006801:Humans; D016410:Lymphoma, T-Cell, Cutaneous / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011788:Quality of Life; D018434:Sickness Impact Profile; D012878:Skin Neoplasms / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D011795:Surveys and Questionnaires