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[癌症对患者愈合状况的影响]

[The impact of cancer on the healing status of patients].

作者信息

Cortesi E

机构信息

Cattedra di Oncologia Medica, Dipartimento di Medicina Sperimentale e Patologia, Università La Sapienza, Roma.

出版信息

Tumori. 1998 Jan-Feb;84(1 Suppl):S20-3. doi: 10.1177/03008916980841s105.

Abstract

The peculiar characteristics of the Italian neoplastic patients, as far as their knowledge concerning the disease (information, prognosis, therapeutic options, etc) and the different cultural, environmental and health realities, place different problems on the routine application of the quality of life questionnaires which were constructed and edited in North European or North American Countries, even if correctly translated and validated in Italy. The QVonc (Quality of Life in Oncology) Project started five years ago from the common interest of medical oncologists who felt the need to make a careful study on some aspects regarding the evaluation of Italian patient's quality of life. A multidisciplinary working group, comprehensive of statisticians, epidemiologists, psychologists, nurses and methodologists, was then put together. During the last three years the Group produced a deep analysis of the different aspects and determinants of the italian patient's quality of life, mainly about their disease and medical environment perception. A prospective research was started in 1995 with the aims of identifying the contents of quality of life, using a sample of cancer patients as "experts" and of measuring the relevance of selected contents in different subgroups of patients. In the first study the quality of life dimensions were analysed as perceived from 248 neoplastic patients, uniformely and randomly distributed for pathology and place of residence in Italy, through an open questionnaire and interviews conducted by our psychologists. Some peculiar aspects of the quality of life perception in italian patients were evidenced: relationship with the family, with the medical team and health facilities, economic problems and occupational difficulties. The study confirmed that the information on the contents of quality of life can be derived only studying people suffering the specific disease and cast a doubt on the available QL instruments currently used. The second study evaluated the quality of life perception in 6939 consecutive cancer patients referred in the second week of July 1996 to 79 Italian medical oncology/radiotherapy institutions. Patients were asked to fill out a questionnaire concerning the importance of 46 domains of QL, each one scored on 4 levels (not at all, a little, much and very much). Domains were derived from a previous content analysis of 268 pts answers to 4 questions related to their own QL: "in your experience, what is QL?", "what is a bad QL?", "what is a good QL?", "Did the diagnosis and treatment received modify your QL?". 6939 patients entered the study; of these, 820 (11.8%) did not fill out the questionnaire due to various reasons. Among the 6,119 evaluable pts, the most frequent cancers were: breast (2,328), colo-rectal (968), lung (517), lymphoma (351), gastric (225). The most frequently chosen domains (much or very much) were related to health facilities or communication between patient-physician/nurse. Family relationship and general well being were also found important, while from the negative perspective the presence of the disease and the related anxiety were the most relevant problems. In conclusion, when choosing or constructing QL instruments, at least for Italian cancer pts, factors such as health facilities and pt--physician/nurse relationship should be more adequately considered. Most currently used QL questionnaires are probably lacking in this regard.

摘要

意大利肿瘤患者具有一些独特的特征,就他们对疾病的了解(信息、预后、治疗选择等)以及不同的文化、环境和健康现实而言,这给在北欧或北美国家构建和编辑的生活质量问卷在意大利的常规应用带来了不同的问题,即便这些问卷在意大利经过了正确翻译和验证。“肿瘤学中的生活质量”(QVonc)项目始于五年前,源于肿瘤内科医生的共同兴趣,他们感到有必要对意大利患者生活质量评估的某些方面进行深入研究。随后组建了一个多学科工作小组,成员包括统计学家、流行病学家、心理学家、护士和方法学家。在过去三年里,该小组对意大利患者生活质量的不同方面和决定因素进行了深入分析,主要是关于他们对疾病和医疗环境的认知。1995年启动了一项前瞻性研究,目的是以癌症患者样本作为“专家”来确定生活质量的内容,并测量选定内容在不同患者亚组中的相关性。在第一项研究中,通过我们的心理学家进行的开放式问卷和访谈,分析了248名肿瘤患者对生活质量维度的认知,这些患者在意大利的病理类型和居住地点上均匀且随机分布。意大利患者生活质量认知的一些独特方面得到了证实:与家庭、医疗团队和医疗机构的关系、经济问题和职业困难。该研究证实,只有通过研究患有特定疾病的人群才能获得关于生活质量内容的信息,并对目前使用的生活质量工具产生了怀疑。第二项研究评估了1996年7月第二周转诊至79家意大利肿瘤内科/放疗机构的6939名连续癌症患者的生活质量认知。患者被要求填写一份关于生活质量46个领域重要性的问卷,每个领域按4个级别评分(完全不重要、有点重要、很重要、非常重要)。这些领域来自之前对268名患者回答的4个与他们自己生活质量相关问题的内容分析:“根据你的经验,什么是生活质量?”“什么是糟糕的生活质量?”“什么是良好的生活质量?”“所接受的诊断和治疗是否改变了你的生活质量?”。6939名患者进入研究;其中,820名(11.8%)因各种原因未填写问卷。在6119名可评估患者中,最常见的癌症类型为:乳腺癌(2328例)、结直肠癌(968例)、肺癌(517例)、淋巴瘤(351例)、胃癌(225例)。最常被选择的领域(很重要或非常重要)与医疗机构或患者与医生/护士之间的沟通有关。家庭关系和总体幸福感也被认为很重要,而从负面角度来看,疾病的存在和相关焦虑是最相关的问题。总之,在选择或构建生活质量工具时,至少对于意大利癌症患者而言,诸如医疗机构和患者与医生/护士关系等因素应得到更充分的考虑。目前大多数使用的生活质量问卷在这方面可能存在不足。

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