Blacklay A, Eiser C, Ellis A
Department of Oncology, Birmingham Children's Hospital.
Arch Dis Child. 1998 Apr;78(4):340-4. doi: 10.1136/adc.78.4.340.
To determine the need for information among survivors of childhood cancer, to assess the acceptability of an information booklet, and to investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours.
Fifty survivors of childhood cancer (age range 14-32 years) who were consecutive attendees at a long term follow up clinic.
The booklet was developed for young people aged 14 years and above by the United Kingdom Children's Cancer Study Group Late Effects Group. Included is information about treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment and life insurance problems. Survivors were interviewed at the follow up clinic, offered the booklet, and contacted approximately one week later for a telephone interview. The clinic interview assessed survivor's understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone interview determined survivors' general reaction to the booklet, whether it increased knowledge and influenced health related behaviours.
All those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being given more information. Over three quarters learned new information from the booklet. There were no indications that the information was associated with anxiety for any demographic or clinical subgroups. After reading the booklet there was an increased awareness of the risk from sunbathing (p < 0.05), and greater appreciation of the importance of follow up (p < 0.05).
These results suggest that written information is likely to be an acceptable and effective supplement to discussions with medical professionals and may readily be incorporated into long term follow up clinics.
确定儿童癌症幸存者对信息的需求，评估一本信息手册的可接受性，并调查该手册在增加知识和影响健康相关行为方面的有效性。
五十名儿童癌症幸存者（年龄范围14 - 32岁），他们是长期随访诊所的连续就诊者。
该手册由英国儿童癌症研究组后期效应组为14岁及以上的年轻人编写。内容包括癌症治疗信息、健康生活方式的一般建议、长期随访的基本原理以及就业和人寿保险问题的信息。在随访诊所对幸存者进行访谈，提供手册，并在大约一周后联系他们进行电话访谈。诊所访谈评估幸存者对其疾病和治疗的理解及其对生活的影响，以及他们对进一步信息的偏好。电话访谈确定幸存者对手册的总体反应，即手册是否增加了知识并影响了健康相关行为。
所有接受访谈的人都接受了书面信息，并同意进行随访访谈。幸存者对获得更多信息充满热情。超过四分之三的人从手册中学到了新信息。没有迹象表明该信息会使任何人口统计学或临床亚组产生焦虑。阅读手册后，对日光浴风险的认识有所提高（p < 0.05），对随访重要性的认识也更强（p < 0.05）。
这些结果表明，书面信息可能是与医学专业人员讨论的一种可接受且有效的补充，并且可以很容易地纳入长期随访诊所。
