Health information needs of childhood cancer survivors and their family

Background. Knowledge about past disease, treatment, and possible late effects has previously been shown to be low in survivors of childhood cancer and their relatives. This study investigated the information needs of childhood cancer survivors and their parents and explored possible determinants for differences in information need and health-related Internet use. Procedure. Childhood cancer survivors or their parents were contacted to complete a questionnaire about their characteristics, Internet use and requirements/ expectations of a website on late effects (N = 160). Results. One-hundred forty-five questionnaires (90.6%) were returned. Of the 69 respondents (49.3%) who had visited a late effects outpatient clinic prior to the survey, 20 (29.0%) had questions left after the consult. The large majority of the population had home access to Internet and 71 respondents (49.3%) used Internet for medical questions. Only 15 respondents (10.5%) used Internet to look for information on late effects of childhood cancer and only 4 survivors found what they were looking for. Main information items requested were information about recognizing late effects, personalized information on late effects treatment and information on self-care. Only six respondents (4.2%) stated they would not visit a late effects website if it would be available. Conclusions. The need for late effects information showed to be of high priority by the majority of respondents, as was their interest in visiting a late effects website. In the development of a late effects website, attention should be given to patient information tailored to the personal situation of the website's users.