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Evaluation of a patient information website for childhood cancer survivors

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Abstract

Purpose

Childhood cancer survivors (CCS) are in need of specialized information about late effects of treatment. In the current study, we assessed the perceived usability and satisfaction with the content of a national website with information on late effects and analyzed possible determinants related to website usability and content satisfaction.

Methods

CCS and their parents were contacted through our local follow-up program and via online media to complete an online questionnaire regarding their baseline characteristics, medical decision style, and the usability and content of the website. Usability was evaluated using the System Usability Scale (SUS), a validated questionnaire resulting in a score from 0 to 100. For the content rating, we constructed a six-item scale resulting in a score from 1 to 5 (Cronbach's α, 0.83). Comments were analyzed qualitatively.

Results

Fifty-five survivors and forty-three parents of survivors completed the questionnaire. Median age of respondents was 41 years (range, 17–58). Respondents rated the website's usability with a mean SUS score of 72.5 (95 % CI, 69.2–74.9). The mean content rating was 3.7 (95 % CI, 3.5–3.8). No determinants were significantly related to the perceived usability or content satisfaction in multivariate analyses. Qualitative analysis revealed respondents' preference for more detailed and even scientific information on late effects.

Conclusion

Respondents were satisfied with the usability and the contents of a website that targeted at their information needs. As knowledge about late effects is still limited among survivors, a website can be a valuable resource to improve their knowledge, promote healthy behavior, and in the end, improve their quality of life.

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Acknowledgments

We would like to thank Valerie Strategier for her efforts in recruiting respondents through the DCCPO. We would also like to express our gratitude to the following members of the steering board of the Dutch Childhood Oncology Group's Late Effects Registry for their support: Wim J. Tissing, Marry M. van den Heuvel-Eibrink, Flora E. van Leeuwen, Eline van Dulmen-den Broeder, Dennis de Jongh, Bep Verkerk, Cécile Ronckers, Dorine Bresters, Jacoba J. Groot-Loonen, Hanneke de Ridder, Liedeke Postma, Willemtje V. Dolsma, Martha A. Grootenhuis, Sebastiaan Neggers, and Valerie Strategier.

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Authors and Affiliations

  1. Department of Medical Informatics, Academic Medical Center, Room J1B-113.2, Meibergdreef 9, 1105 AZ, Amsterdam, The Netherlands

    Sebastiaan L. Knijnenburg & Monique W. Jaspers

  2. Department of Pediatric Oncology, Emma Children’s Hospital, Academic Medical Center, 1105 AZ, Amsterdam, The Netherlands

    Sebastiaan L. Knijnenburg, Leontien C. Kremer, Minke S. Mud, Heleen J. van der Pal & Huib N. Caron

  3. Department of Pediatric Oncology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands

    A. Birgitta Versluys

  4. Department of Pediatric Oncology, VU University Medical Center, Amsterdam, The Netherlands

    Katja I. Braam

  5. Department of Medical Oncology, Academic Medical Center, 1105 AZ, Amsterdam, The Netherlands

    Minke S. Mud & Heleen J. van der Pal

Authors
  1. Sebastiaan L. Knijnenburg
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  2. Leontien C. Kremer
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  3. A. Birgitta Versluys
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  4. Katja I. Braam
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  5. Minke S. Mud
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  6. Heleen J. van der Pal
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  7. Huib N. Caron
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  8. Monique W. Jaspers
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Corresponding author

Correspondence to Sebastiaan L. Knijnenburg.

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Knijnenburg, S.L., Kremer, L.C., Versluys, A.B. et al. Evaluation of a patient information website for childhood cancer survivors. Support Care Cancer 21, 919–926 (2013). https://doi.org/10.1007/s00520-012-1604-7

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  • DOI: https://doi.org/10.1007/s00520-012-1604-7

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