DEVELOPMENT AND EVALUATION OF AN INFORMATION BOOKLET FOR ADULT SURVIVORS OF CANCER IN CHILDHOOD

Aims-To determine the need for information among survivors of childhoo d cancer, to assess the acceptability of an information booklet, and t o investigate the effectiveness of the booklet in increasing knowledge and influencing health related behaviours. Subjects-Fifty survivors o f childhood cancer (age range 14-32 years) who were consecutive attend ees at a long term follow up clinic. Methods-The booklet was developed for young people aged 14 years and above by the United Kingdom Childr en's Cancer Study Group Late Effects Group. Included is information ab out treatment of cancer, general advice about a healthy lifestyle, the rationale for long term follow up, and information about employment a nd life insurance problems. Survivors were interviewed at the follow u p clinic, offered the booklet, and contacted approximately one week la ter for a telephone interview. The clinic interview assessed survivors ) understanding of their illness and treatment and its impact on their lives, and their preferences for further information. The telephone i nterview determined survivors' general reaction to the booklet, whethe r it increased knowledge and influenced health related behaviours. Res ults-All those interviewed accepted the written information and agreed to a follow up interview. Survivors were enthusiastic about being giv en more information. Over three quarters learned new information from the booklet. There were no indications that the information was associ ated with anxiety for any demographic or clinical subgroups. After rea ding the booklet there was an increased awareness of the risk from sun bathing (p < 0.05), and greater appreciation of the importance of foll ow up (p < 0.05). Conclusions-These results suggest that written infor mation is likely to be an acceptable and effective supplement to discu ssions with medical professionals and may readily be incorporated into long term follow up clinics.