Development and evaluation of an information booklet for adult survivors of cancer in childhood

AIMS—To determine the need for information amongsurvivors of childhood cancer, to assess the acceptability of aninformation booklet, and to investigate the effectiveness of thebooklet in increasing knowledge and influencing health related behaviours.
SUBJECTS—Fifty survivors of childhood cancer (agerange 14-32 years) who were consecutive attendees at a long termfollow up clinic.
METHODS—The booklet was developed for youngpeople aged 14 years and above by the United Kingdom Children''s CancerStudy Group Late Effects Group. Included is information about treatmentof cancer, general advice about a healthy lifestyle, the rationale forlong term follow up, and information about employment and lifeinsurance problems.
Survivors were interviewed at the follow up clinic, offeredthe booklet, and contacted approximately one week later for a telephoneinterview. The clinic interview assessed survivors'' understanding oftheir illness and treatment and its impact on their lives, and theirpreferences for further information. The telephone interview determinedsurvivors'' general reaction to the booklet, whether it increasedknowledge and influenced health related behaviours.
RESULTS—All those interviewed accepted thewritten information and agreed to a follow up interview. Survivors wereenthusiastic about being given more information. Over three quarterslearned new information from the booklet. There were no indicationsthat 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).
CONCLUSIONS—These results suggest that writteninformation is likely to be an acceptable and effective supplement todiscussions with medical professionals and may readily be incorporatedinto long term follow up clinics.