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Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey

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Abstract

Introduction

The supportive care needs of testicular cancer survivors have not been comprehensively studied. Likewise, there is limited research on their use of the Internet or social media applications—tools that are popular among young adults and which could be used to address their needs.

Methods

Two hundred and four testicular cancer patients receiving care at an urban cancer center completed a questionnaire assessing supportive care needs and the use and preferences for online support. We examined the associations between patient characteristics and met or unmet supportive care needs and the use of testicular cancer online communities.

Results

Respondents had more met (median 8.0, interquartile range (IQR) 10.0) than unmet (median 2.0, IQR 7.0) needs. The majority (62.5%) reported at least one unmet need, most commonly (25%) concerning financial support, body image, stress, being a cancer survivor, and fear of recurrence. Patients who were younger, had nonseminoma testicular cancer, or received treatment beyond surgery had more needs, and those who were unemployed had more unmet needs. The majority of respondents (71.5%) were social media users (e.g., Facebook), and 26% had used a testicular cancer online support community. Reasons for nonuse were lack of awareness (34.3%), interest (30.9%), trust (4.9%), and comfort using computers (2.5%). Users were more likely to speak English as a first language and have more needs.

Conclusions

At least one in four testicular cancer survivors has unmet needs related to financial support, body image, stress, being a cancer survivor, and fear of recurrence. A web-based resource may be a useful strategy to consider given the high prevalence of social media use in this sample and their desire for online support. Efforts are needed to raise awareness about online peer support resources and to overcome barriers to their use.

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Acknowledgments

This study was conducted with support from the Princess Margaret Hospital Foundation through the Testicular Site Group and Oncology Education. We would like to thank Lynn Anson-Cartwright for her assistance with the participant recruitment.

Conflicts of interest

None of the authors have any conflicts of interest. JLB and DW have full control of all primary data and are the guarantors.

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Authors and Affiliations

  1. ELLICSR: Health, Wellness and Cancer Survivorship Centre, Toronto General Hospital, Clinical Services Building, Basement BCS021, 200 Elizabeth Street, Toronto, M5G 2C4, ON, Canada

    Jacqueline L. Bender, David Wiljer & Matthew J. To

  2. Department of Radiation Oncology, Faculty of Medicine, University Health Network, 1 Kings College Circle, Toronto, M5G 1A8, ON, Canada

    David Wiljer

  3. Centre for Global eHealth Innovation, University of Toronto and University Health Network, 190 Elizabeth Street, Toronto, M5G 2M9, ON, Canada

    Jacqueline L. Bender

  4. Division of Medical Oncology & Hematology, Princess Margaret Hospital University Health Network, 610 University Avenue, Toronto, M5S 2M9, ON, Canada

    Philippe L. Bedard & Malcolm Moore

  5. Department of Medical Oncology, Faculty of Medicine, University of Toronto, 1 Kings College Circle, Toronto, M5S 1A8, ON, Canada

    Philippe L. Bedard & Malcolm Moore

  6. Radiation Medicine Program, Princess Margaret Hospital University Health Network, 610 University Avenue, Toronto, M5S 2M9, ON, Canada

    Peter Chung, Padraig Warde & Mary Gospodarowicz

  7. Department of Radiation Oncology, Faculty of Medicine, University of Toronto, 1 Kings College Circle, Toronto, M5S 1A8, ON, Canada

    Peter Chung, Padraig Warde & Mary Gospodarowicz

  8. Division of Urology, Princess Margaret Hospital University Health Network, 610 University Avenue, Toronto, M5S 2M9, ON, Canada

    Michael A. S. Jewett & Andrew Matthew

  9. Department of Surgery, Faculty of Medicine, University of Toronto, 1 Kings College Circle, Toronto, ON, M5S 1A8, Canada

    Michael A. S. Jewett

  10. Departments of Surgery and Psychiatry, Faculty of Medicine, University of Toronto, 1 Kings College Circle, Toronto, ON, M5S 1A8, Canada

    Andrew Matthew

Authors
  1. Jacqueline L. Bender
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  2. David Wiljer
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  3. Matthew J. To
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  4. Philippe L. Bedard
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  6. Michael A. S. Jewett
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  8. Malcolm Moore
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  10. Mary Gospodarowicz
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Corresponding author

Correspondence to David Wiljer.

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Bender, J.L., Wiljer, D., To, M.J. et al. Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey. Support Care Cancer 20, 2737–2746 (2012). https://doi.org/10.1007/s00520-012-1395-x

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  • DOI: https://doi.org/10.1007/s00520-012-1395-x

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