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[恶性面部及皮肤肿瘤患者的生活质量——问卷的编制及一项研究的初步结果]

[Quality of life of patients with malignant facial and skin tumors--development of a questionnaire and initial findings of a study].

作者信息

Tilkorn M, Mawick R, Sommerfeld S, Strittmatter G

机构信息

Abteilung für psychosoziale Rehabilitation der Fachklinik Hornheide, Münster.

出版信息

Rehabilitation (Stuttg). 1990 May;29(2):134-9.

PMID:2367741
Abstract

Assisted by Deutsche Krebshilfe, the German cancer aid fund, a questionnaire for assessment of quality of life in patients with life-threatening skin tumours and disfiguring tumour sequels was developed at Fachklinik Hornheide between 1986 and 1988. A first step toward determining quality of life and for enhancing treatment-integrated rehabilitative work is the assessment of the subjective distress and problems experienced due to the illness and its treatment. This is the objective of the Hornheider Fragebogen, a questionnaire developed in the framework of the study on the basis of extensive literature search, structured interviews with patients and treating staff. This self-assessment instrument was answered by 131 patients with malignant tumours of the skin, twice during in-patient treatment and a third time some 6 months after discharge. Statistical analysis of the data collected proved the questionnaire to be valid, reliable and practicable. Additionally, it has been possible to draw up a number of significant results of immediate relevancy. It turned out that persons who are unemployed, divorced, or married but separated, as well as persons without school leaving certificate, experienced greater distress and more problems in many dimensions than the other respondents. The questionnaire was viewed as meaningful and as helpful by the patients in order to voice unspecific anxiety and questions. Also, the study entailed positive implications for our rehabilitative work already in this initial testing phase, by enabling us to give more specific support to the patients. The Hornheider Fragebogen, after review and abridgment, consists of 27 problem-oriented questions relating to eight dimensions of life.

摘要

在德国癌症援助基金Deutsche Krebshilfe的协助下,1986年至1988年间,霍恩海德专科诊所开发了一份用于评估危及生命的皮肤肿瘤和毁容性肿瘤后遗症患者生活质量的问卷。确定生活质量以及加强综合治疗康复工作的第一步是评估因疾病及其治疗而产生的主观痛苦和问题。这就是霍恩海德问卷(Hornheider Fragebogen)的目标,该问卷是在广泛文献检索、对患者和治疗人员进行结构化访谈的基础上,在研究框架内开发的。131名皮肤恶性肿瘤患者回答了这份自我评估工具,在住院治疗期间回答了两次,出院约6个月后回答了第三次。对收集到的数据进行的统计分析证明该问卷有效、可靠且可行。此外,还得出了一些具有直接相关性的重要结果。结果表明,失业、离婚或已婚但分居的人,以及没有毕业证书的人,在许多方面比其他受访者经历了更大的痛苦和更多的问题。患者认为该问卷有意义且有帮助,能够表达非特定的焦虑和问题。此外,在这个初步测试阶段,该研究就已经对我们的康复工作产生了积极影响,使我们能够为患者提供更具体的支持。经过审查和删减后,霍恩海德问卷由27个与生活八个维度相关的面向问题的问题组成。

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