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儿童和青少年癌症幸存者对自身疾病及治疗影响的了解。

Childhood and adolescent cancer survivors' knowledge of their disease and effects of treatment.

作者信息

Bashore Lisa

机构信息

Hematology and Oncology Center, Life After Cancer Program, Cook Children's Medical Center, Fort Worth, Texas 76104, USA.

出版信息

J Pediatr Oncol Nurs. 2004 Mar-Apr;21(2):98-102. doi: 10.1177/1043454203262754.

Abstract

Most children diagnosed with cancer will become survivors of their disease. However, a large number of these children may be at risk for the development of late complications. It is not clear whether these survivors and their families are aware of their treatment history including diagnosis, treatment, and the late complications of their treatment. The purpose of this needs assessment was to ascertain survivors' knowledge of their disease, the various treatment modalities, and whether they were aware of their individual risks for developing late complications of their treatment. A brief six-item questionnaire was developed to determine survivors' knowledge of their cancer treatment and to be completed just before at their survivor visit. A total of 141 survivors completed this questionnaire. The mean age at diagnosis was 6.8 years, and the median age at the time of this assessment was 16 years. Although all of the subjects stated they knew their disease, only 84% (n = 118) listed their diagnosis. The majority of the survivors knew they received chemotherapy, but only 50% were able to list one or more specific drugs they received. Further lack of knowledge was also evident for survivors who received radiotherapy. The results of this assessment represent a lack of knowledge especially of the survivors' individual risk for developing late complications of their therapy. Education about late complications of therapy should be introduced early and often such as at diagnosis, within months of the completion of therapy, and during every survivor clinic visit. A complete treatment summary should be provided to all survivors. This summary should include the survivors' individual risks for developing late complications and how their own health behaviors may influence the development of these late complications.

摘要

大多数被诊断患有癌症的儿童最终会成为癌症幸存者。然而,这些儿童中有很大一部分可能面临后期并发症的风险。目前尚不清楚这些幸存者及其家人是否了解他们的治疗史,包括诊断、治疗以及治疗的后期并发症。本次需求评估的目的是确定幸存者对其疾病、各种治疗方式的了解情况,以及他们是否意识到自己有发生治疗后期并发症的个体风险。为此设计了一份简短的六项问卷,以确定幸存者对其癌症治疗的了解情况,并在幸存者就诊前完成。共有141名幸存者完成了这份问卷。诊断时的平均年龄为6.8岁,本次评估时的中位年龄为16岁。尽管所有受试者都表示他们知道自己的疾病,但只有84%(n = 118)列出了他们的诊断。大多数幸存者知道自己接受了化疗,但只有50%能够列出他们接受的一种或多种具体药物。接受放疗的幸存者也明显缺乏相关知识。本次评估结果表明,尤其是幸存者对自己发生治疗后期并发症的个体风险缺乏了解。应尽早且频繁地开展关于治疗后期并发症的教育,比如在诊断时、治疗结束后的几个月内以及每次幸存者门诊就诊时。应向所有幸存者提供完整的治疗总结。这份总结应包括幸存者发生后期并发症的个体风险,以及他们自身的健康行为可能如何影响这些后期并发症的发生。

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