Health information needs of childhood cancer survivors and their family

Authors

  • Sebastiaan L. Knijnenburg MSc,

    Corresponding author
    1. Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands
    • Department of Medical Informatics, Academic Medical Center, Room J1B-113.2, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands.
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  • Leontien C. Kremer MD, PhD,

    1. Department of Paediatric Oncology, Emma Children's Hospital/Academic Medical Center, Amsterdam, The Netherlands
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  • Cor van den Bos MD, PhD,

    1. Department of Paediatric Oncology, Emma Children's Hospital/Academic Medical Center, Amsterdam, The Netherlands
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  • Katja I. Braam MSc,

    1. Department of Paediatric Oncology-Hematology, VU University Medical Center, Amsterdam, The Netherlands
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  • Monique W.M. Jaspers PhD

    Corresponding author
    1. Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands
    • Department of Medical Informatics, Academic Medical Center, Room J1B-113.2, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands.
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Abstract

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. Pediatr Blood Cancer 2010; 54:123–127. © 2009 Wiley-Liss, Inc.

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