Testicular cancer survivors' supportive care needs and use of online support: a cross-sectional survey
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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.
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.
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.
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.
KeywordsTesticular cancer Survivor Supportive care needs Internet Social media Online community
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.
- 2.American Cancer Society (2010) Cancer facts and figures 2010. American Cancer Society, AtlantaGoogle Scholar
- 3.Canadian Cancer Society (2010) Canadian cancer statistics 2010. Canadian Cancer Society, TorontoGoogle Scholar
- 9.Lenhart A, Purcell K, Smith A, Zickuhr (2010) Social media and young adults. Pew Internet and American Life Project, Februrary 3, 2010. http://www.pewinternet.org/Reports/2010/Social-Media-and-Young-Adults.aspx. Accessed June 2011
- 17.Statistics Canada (2010) Canada internet use survey. In The Daily, May 10, 2010. http://www.statcan.gc.ca/daily-quotidien/100510/dq100510a-eng.htm. Accessed June 2011
- 18.Fox S (2011) The social life of health information. Pew Internet and American Life Project, May 12, 2011. http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info.aspx. Accessed June 2011
- 23.Warde PR, Hogg D, Gospodarowicz M (2012) Testicular cancer. In: Gunderson LL, Tepper JE (eds) Clinical radiation oncology, 3rd edn. Elsevier Saunders, PhiladelphiaGoogle Scholar
- 35.Klemm P, Bunnell D, Cullen M, Soneji R, Gibbons P, Holecek A (1999) Gender differences on internet cancer support groups. Comput Inform Nu 17(2):65–72Google Scholar
- 38.Fogel J, Ribisl KM, Morgan PD, Humphreys K, Lyons EJ (2008) Underrepresentation of African Americans in online cancer support groups. J Ntl Med Assoc 100(6):705–712Google Scholar