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

Abstract

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.