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黑色素瘤癌症患者的相关生活质量问题有哪些?旨在开发一个新模块来配合 EORTC 核心问卷。

What are the pertinent quality-of-life issues for melanoma cancer patients? Aiming for the development of a new module to accompany the EORTC core questionnaire.

机构信息

Patricia Ritchie Centre for Cancer Care and Research, Mater Hospital, Northern Clinical School, University of Sydney, Sydney, NSW 2059, Australia.

出版信息

Melanoma Res. 2013 Apr;23(2):167-74. doi: 10.1097/CMR.0b013e32835e5932.

Abstract

Melanoma is the most serious type of skin cancer. However, there is a paucity of evidence on the impact of melanoma on the quality of life (QoL) of patients. Only two clinically validated QoL instruments have been reported in the literature. The present study has identified contemporary QoL issues during a time of great change for melanoma treatment, as a precursor to an international study to develop a new melanoma-specific QoL instrument. Twenty-two melanoma patients (American Joint Committee on Cancer stages I-IV) and 10 close family members were recruited from a metropolitan tertiary referral clinical and research centre in Sydney, Australia, to participate in interview or focus group discussions. Verbatim transcripts of these recorded interviews were systematically analysed. Seventy-three issues across seven health-related QoL domains were identified. Issues across three domains featured highly; psychosocial, availability of support and information. Given the current rapid evolution of systemic therapies for melanoma, the challenges associated with treatment choices and clinical trial participation were also highlighted in this sample. Although some issues were generic in nature, experienced by many cancer patients, this study revealed that the wide range and intensity of QoL issues reported by melanoma patients are not adequately evaluated in current QoL instruments. With the increasing importance of patient reported outcome measurement, this list has been transformed into questionnaire items, in collaboration with the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Group, for testing a new melanoma-specific QoL module for use with the EORTC core questionnaire (QLQ-C30).

摘要

黑色素瘤是最严重的皮肤癌类型。然而,关于黑色素瘤对患者生活质量(QoL)影响的证据很少。文献中仅报道了两种经过临床验证的 QoL 工具。本研究在黑色素瘤治疗发生重大变化的时期确定了当代 QoL 问题,作为一项旨在开发新的黑色素瘤特异性 QoL 工具的国际研究的前奏。22 名黑色素瘤患者(美国癌症联合委员会分期 I-IV 期)和 10 名近亲从澳大利亚悉尼的一家大都市三级转诊临床和研究中心招募,参加访谈或焦点小组讨论。这些记录访谈的逐字记录被系统地分析。在七个与健康相关的 QoL 领域中确定了 73 个问题。三个领域的问题突出;心理社会、支持和信息的可用性。鉴于目前黑色素瘤的系统治疗迅速发展,本研究还强调了治疗选择和临床试验参与相关的挑战。尽管有些问题具有普遍性,许多癌症患者都经历过,但本研究表明,目前的 QoL 工具并未充分评估黑色素瘤患者报告的广泛而强烈的 QoL 问题。随着患者报告的结果测量的重要性不断增加,这个清单已经与欧洲癌症研究与治疗组织(EORTC)质量生活组合作,转化为问卷项目,用于测试新的黑色素瘤特异性 QoL 模块,用于 EORTC 核心问卷(QLQ-C30)。

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