Tsunematsu Y, Kumagai M, Hirabayashi M, Sasaki M, Takahashi H, Koide R, Taguchi N, Masaki H, Saeki M
Division of Hematology, National Children's Hospital.
Gan To Kagaku Ryoho. 1990 Apr;17(4 Pt 2):878-83.
Multidisciplinary clinical research on childhood cancer has achieved a marked improvement in survival rate during the last two decades. Due to the increase of long-term survivors, the survey of quality of life (QOL) of cured children is essential. But methods to estimate QOL of children have not been established. We attempted to estimate the QOL of surviving patients from the responses to a questionnaire filled out by their parents. The total number of patients treated at the National Children's Hospital from 1965-1987 was 937, of which 296 patients are still surviving. Among these survivors 108 patients were selected to be surveyed because they were being followed up by our attending physicians. The originally elaborated questionnaire was sent to parents in June 1989. Seventy-eight parents responded. The questionnaire consisted of four major questions. The first was how the QOL of the child compared to that of an ordinary child. The parents circled the appropriate level of QOL determined by our scale (1 lower, 4 the same as ordinary child, 7 excellent). The average score was 5.61 showing that parents felt their child's QOL is superior to an ordinary child. The second question concerned how the present status of the child was influenced by the experience of cancer. Answers were divided into five categories as follows: 1) Good or positive (10%); 2) nothing in particular (49%); minimum (29%); negative (9%); and other (7%). The third question concerned any anxieties. Most parents had numerous anxieties about the relapse, late effects, education, job prospects, marriage and offspring and getting the latest information. The fourth question dealt with what to tell the child as to their true diagnosis. Answers were divided as follows: absolutely no (56%); yes, but in the future (23%); yes, already done (10%); and yes, through our physician; (13%). After studying the questionnaires we interviewed the parents. We noticed that the parent/child relationship was very close. A meeting was conducted with parents and all the staff (doctors, psychologists and nurses). In conclusion, the QOL in surviving childhood cancer patients is considered to be better than that of ordinary children by their parents. This result is likely due to the excellent parent/child relationship.
在过去二十年里，儿童癌症的多学科临床研究使生存率有了显著提高。由于长期存活者数量增加，对治愈儿童的生活质量（QOL）进行调查至关重要。但尚未建立评估儿童生活质量的方法。我们试图通过患儿父母填写的问卷回复来评估存活患者的生活质量。1965年至1987年在国立儿童医院接受治疗的患者总数为937人，其中296名患者仍存活。在这些幸存者中，108名患者被选中进行调查，因为他们正在接受我们主治医生的随访。最初精心设计的问卷于1989年6月发给父母。78位父母进行了回复。问卷包括四个主要问题。第一个问题是孩子的生活质量与普通孩子相比如何。父母圈出由我们的量表确定的适当生活质量水平（1为较低，4与普通孩子相同，7为优秀）。平均得分是5.61，表明父母认为他们孩子的生活质量优于普通孩子。第二个问题涉及孩子的当前状况如何受到癌症经历的影响。答案分为以下五类：1）良好或积极（10%）；2）无特别影响（49%）；影响最小（29%）；消极影响（9%）；其他（7%）。第三个问题涉及任何焦虑情况。大多数父母对复发、远期效应、教育、就业前景、婚姻和子女以及获取最新信息有诸多焦虑。第四个问题涉及就真实诊断情况该如何告知孩子。答案如下：绝对不告知（56%）；会告知，但在未来（23%）；已经告知（10%）；通过医生告知（13%）。在研究问卷后，我们采访了父母。我们注意到亲子关系非常亲密。还与父母及所有工作人员（医生、心理学家和护士）举行了一次会议。总之，父母认为儿童癌症存活患者的生活质量优于普通儿童。这一结果可能归因于良好的亲子关系。
