Fosså S D, Moynihan C, Serbouti S
Department of Medical Oncology and Radiotherapy, Norwegian Radium Hospital, Montebello, Oslo, Norway.
Support Care Cancer. 1996 Mar;4(2):118-28. doi: 10.1007/BF01845761.
Patient-based questionnaires were designed with the aim to identify and rank long-term somatic and psychosocial morbidity in patients with low-stage testicular cancer. A further intention was to compare patients' assessments with experienced doctors' general opinion on quality of life items in cured testicular cancer patients. In pilot study I, 103 tumour-free patients ranked items of physical and psychosocial morbidity after having had various kinds of treatment. Though the ranking procedure appeared to cause some difficulties amongst the patients and subsequently was abandoned, the results indicated considerable differences between the patients' and doctors' evaluations. In pilot study II patients were asked to score the different items. The questionnaire of pilot study II was completed by 107 patients from the Norwegian Radium Hospital (NRH) and 99 relapse-free patients from the Royal Marsden Hospital (RMH) with testicular cancer stage I at least 1 year after infradiaphragmatic radiotherapy (n = 94) or adjuvant chemotherapy (2 cycles, n = 26), or patients who had been followed on the surveillance program (n = 86). A total of 93 doctors completed a similar questionnaire, thereby expressing their general opinion on long-term morbidity in comparable testicular cancer patients as seen during routine clinical follow-up. Both the irradiated patients and those on the surveillance program reported slight degrees of Raynaud-like phenomena, neurotoxicity and ototoxicity, most probably representing "background morbidity" in an age-matched general male population. Doctors tended to underestimate their patients' somatic morbidity, but often overestimated the degree of psychological distress, in particular in patients on the surveillance program. Significant differences between RMH and NRH patients with regard to sexual problems and to leisure time activity may be explained by cultural differences in the two countries. The items presented in the questionnaire used identify important issues for patients cured of testicular cancer which may be used in future multicentre trans-cultural studies assessing these patients' quality of life. This will provide sufficient data for psychometric testing and, together with the findings from patients' free comments, support the final design of a testicular cancer quality of life module.
基于患者的调查问卷旨在识别低分期睾丸癌患者的长期躯体和心理社会发病率并进行排序。另一个目的是将患者的评估与经验丰富的医生对治愈的睾丸癌患者生活质量项目的总体看法进行比较。在试点研究I中，103名无肿瘤患者在接受各种治疗后对躯体和心理社会发病率项目进行了排序。尽管排序过程在患者中似乎造成了一些困难，随后被放弃，但结果表明患者和医生的评估存在相当大的差异。在试点研究II中，要求患者对不同项目进行评分。试点研究II的问卷由挪威镭医院（NRH）的107名患者和皇家马斯登医院（RMH）的99名无复发患者完成，这些患者患有I期睾丸癌，在膈下放疗（n = 94）或辅助化疗（2个周期，n = 26）后至少1年，或接受监测项目随访的患者（n = 86）。共有93名医生完成了一份类似的问卷，从而表达了他们对常规临床随访中可比睾丸癌患者长期发病率的总体看法。接受放疗的患者和接受监测项目的患者均报告有轻微程度的雷诺样现象、神经毒性和耳毒性，这很可能代表了年龄匹配的一般男性人群中的“背景发病率”。医生往往低估了患者的躯体发病率，但经常高估心理困扰的程度，尤其是在接受监测项目的患者中。RMH和NRH患者在性问题和休闲活动方面的显著差异可能由两国的文化差异来解释。问卷中列出的项目确定了睾丸癌治愈患者的重要问题，这些问题可用于未来评估这些患者生活质量的多中心跨文化研究。这将为心理测量测试提供足够的数据，并与患者自由评论的结果一起，支持睾丸癌生活质量模块的最终设计。
