Significant impact of cutaneous T-cell lymphoma on patients' quality of life - Results of a 2005 National Cutaneous Lymphoma Foundation Survey
Significant impact of cutaneous T-cell lymphoma on patients' quality of life - Results of a 2005 National Cutaneous Lymphoma Foundation Survey
复制标题
DOI：
10.1002/cncr.22252
复制
发表时间：
2006-11-15
期刊：
影响因子：
6.2
通讯作者：
Miller, Donald R.
中科院分区：
文献类型：
--
作者：
Demierre, Marie-France;Gan, Stephanie;Miller, Donald R.
背景。皮肤t细胞淋巴瘤（CTCL）可对患者的健康相关生活质量产生深远影响；然而，人们对其实际影响知之甚少。作者评估了患者对CTCL对身体功能、生活方式、情绪健康和治疗满意度的影响的看法。2005年3月，一份4页的自我管理问卷被邮寄并在线提供给真菌病基金会的所有美国会员（n = 930名会员）。结果测量是患者对CTCL的心理社会影响和疾病管理的看法。回复率为68%，其中93.6%为白人。大多数应答者有蕈样真菌病（89%）。受访者对皮肤发红（94%）和影响其服装选择的症状程度（63%）感到困扰。对于大多数患者来说，这种疾病对他们的功能有影响，使他们感到疲倦或影响他们的睡眠。几乎所有受访者都报告了健康困扰，94%的人报告说他们担心疾病的严重性，80%的人担心死于疾病。62%的答复者报告说，他们的疾病使他们觉得自己没有吸引力，85%的人报告说，他们的治疗使他们的疾病似乎更容易控制，但61%的人报告说，他们感到自己的疾病给他们带来了经济负担。高回复率和患者对调查的反应提供了令人信服的证据，表明患者认为CTCL对他们的功能、情感和社会健康有深刻而严重的影响。几乎所有答复者都普遍存在令人震惊的健康问题。虽然大多数患者报告说，治疗使他们的疾病更容易控制，但很大一部分人报告说，他们感到自己的疾病在经济上负担沉重。
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.