Supportive Care in Cancer

, Volume 20, Issue 11, pp 2737–2746 | Cite as

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

  • Jacqueline L. Bender
  • David WiljerEmail author
  • Matthew J. To
  • Philippe L. Bedard
  • Peter Chung
  • Michael A. S. Jewett
  • Andrew Matthew
  • Malcolm Moore
  • Padraig Warde
  • Mary Gospodarowicz
Original Article



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.


Testicular 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.


  1. 1.
    Hayes-Lattin B, Nichols CR (2009) Testicular cancer: a prototypic tumor of young adults. Sem Oncol 36(5):432–438CrossRefGoogle Scholar
  2. 2.
    American Cancer Society (2010) Cancer facts and figures 2010. American Cancer Society, AtlantaGoogle Scholar
  3. 3.
    Canadian Cancer Society (2010) Canadian cancer statistics 2010. Canadian Cancer Society, TorontoGoogle Scholar
  4. 4.
    Verdecchia A, Francisco S, Brenner H, Gatta G, Mangone L, Kunkler I, EUROCARE-4 Working Group (2007) Recent cancer survival in Europe: a 2000–02 period analysis of EUROCARE-4 data. Lancet Oncol 8(9):784–796PubMedCrossRefGoogle Scholar
  5. 5.
    Mykletun A, Dahl AA, Haalan CF, Brennes R, Dahl O, Klepp O, Wist E, Fossa SD (2005) Side effects and cancer-related stress determine quality of life in long-term survivors of testicular cancer. J Clin Oncol 23(13):3061–3068PubMedCrossRefGoogle Scholar
  6. 6.
    Gospodarowicz M (2008) Testicular cancer patients: considerations in long-term follow-up. Hematol Oncol Clin North Am 22(2):245–255PubMedCrossRefGoogle Scholar
  7. 7.
    Rudberg L, Carlsson M, Nilsson S, Wikblad K (2002) Self-percieved physical, psychologic and general symptoms of survivors of testicular cancer 3 to 13 years after treatment. Cancer Nurs 25(3):187–195PubMedCrossRefGoogle Scholar
  8. 8.
    Alfano CM, Rowland JH (2006) Recovery issues in cancer survivorship: a new challenge for supportive care. J Cancer 12(5):432–443CrossRefGoogle Scholar
  9. 9.
    Lenhart A, Purcell K, Smith A, Zickuhr (2010) Social media and young adults. Pew Internet and American Life Project, Februrary 3, 2010. Accessed June 2011
  10. 10.
    Fleer J, Hoekstra HJ, Sleijfer DT et al (2004) Quality of life of survivors of testicular germ cell cancer: a review of the literature. Support Care Cancer 12(7):476–486PubMedCrossRefGoogle Scholar
  11. 11.
    Dahl AA, Mykletun A, Fossa SD (2005) Quality of life in survivors of testicular cancer. Urologic Oncol 23(3):193–200CrossRefGoogle Scholar
  12. 12.
    Rosendal S, Kristensen E, Giraldi AG (2008) Sexual dysfunctions in men treated for testicular cancer—secondary publication. Dan Med Bull 55(4):211–215PubMedGoogle Scholar
  13. 13.
    Fleer J, Sleijfer D, Hoekstra H, Tuinman M, Klip E, Hoekstra-Weebers J (2006) Objective and subjective predictors of cancer-related stress symptoms in testicular cancer survivors. Patient Educ Couns 64(1–3):142–150PubMedCrossRefGoogle Scholar
  14. 14.
    Travis LB, Beard C, Allan JM, Dahl AA, Feldman DR, Oldenburg J (2010) Testicular cancer survivorship: research strategies and recommendations. J Ntl Cancer Inst 102(15):1114–1130CrossRefGoogle Scholar
  15. 15.
    Zebrack B (2008) Information and service needs for young adult cancer patients. Support Care Cancer 16(12):1353–1360PubMedCrossRefGoogle Scholar
  16. 16.
    Jonker-Pool G, Hoekstra HJ, van Imhoff GW, Sleijfer DT, van Driel MF, Koops HS, van de Wiel HB (2004) Male sexuality after cancer treatment—needs for information and support: testicular cancer compared to malignant lymphoma. Patient Educ Counsel 52(2):143–150CrossRefGoogle Scholar
  17. 17.
    Statistics Canada (2010) Canada internet use survey. In The Daily, May 10, 2010. Accessed June 2011
  18. 18.
    Fox S (2011) The social life of health information. Pew Internet and American Life Project, May 12, 2011. Accessed June 2011
  19. 19.
    Bender JL, O'Grady L, Jadad AR (2008) Supporting cancer patients through the continuum of care: a view from the age of social networks and computer-mediated communication. Curr Oncol 15(Suppl 2), s42-47PubMedGoogle Scholar
  20. 20.
    Sharf BF (1997) Communicating breast cancer on-line: support and empowerment on the internet. Women Health 26(1):65–84PubMedCrossRefGoogle Scholar
  21. 21.
    Broom A (2005) Virtually he@lthy: the impact of internet use on disease experience and the doctor-patient relationship. Qual Health Res 15(3):325–345PubMedCrossRefGoogle Scholar
  22. 22.
    Hellawell GO, Turner KJ, Le Monnier KJ, Brewster SF (2000) Urology and the internet: an evaluation of internet use by urology patients and of information available on urological topics. Brit J Urol Int 86(3):191–194CrossRefGoogle Scholar
  23. 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
  24. 24.
    Wood L, Kollmannsberger C, Jewett M, Chung P, Hotte S, O'Malley M et al (2010) Canadian consensus guidelines for the management of testicular germ cell cancer. Can Urol Assoc J 4(2):e19–e38PubMedGoogle Scholar
  25. 25.
    Skaali T, Fossa SD, Bremnes R, Dahl O, Haaland CF, Hauge ER, Klepp O, Oldenberg J, Wist E, Dahl AA (2009) Fear of recurrence in long-term testicular cancer survivors. Psycho-Oncol 18(6):580–588CrossRefGoogle Scholar
  26. 26.
    Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Wain G (2007) The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). Psychooncol 16(9):796–804CrossRefGoogle Scholar
  27. 27.
    Rudberg A, Nilsson S, Wikblad K (2000) Health-related qualit of life in survivors of testicular cancer 3 to 13 years after treatment. J Psychosoc Oncol 18(3):19–31CrossRefGoogle Scholar
  28. 28.
    Vidrine DJ, Hoekstra-Weebers JE, Hoekstra HJ, Tuinman MA, Marani S, Gritz ER (2010) The effects of testicular cancer treatment on health-related quality of life. Urology 75(3):636–641PubMedCrossRefGoogle Scholar
  29. 29.
    Bender JL, Jimenez-Marroquin MC, Jadad AR (2011) Seeking support on facebook: a content analysis of breast cancer groups. J Med Internet Res 13(1):e16PubMedCrossRefGoogle Scholar
  30. 30.
    Davis FD (1989) Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Q 13(3):319–339CrossRefGoogle Scholar
  31. 31.
    Norman CD, Skinner HA (2006) eHealth literacy: essential skills for consumer health in a networked world. J Med Internet Res 8(2):e9PubMedCrossRefGoogle Scholar
  32. 32.
    Rimer BK, Lyons EJ, Ribisl KM, Bowling JM, Golin CE, Forlenza MJ, Meier A (2005) How new subscribers use cancer-related online mailing lists. J Med Internet Res 7(3):e32PubMedCrossRefGoogle Scholar
  33. 33.
    Owen JE, Klapow JC, Roth DL, Tucker DC (2004) Use of the internet for information and support: disclosure among persons with breast and prostate cancer. J Behav Med 27(5):491–505PubMedCrossRefGoogle Scholar
  34. 34.
    Seale C, Ziebland S, Charteris-Black J (2006) Gender, cancer experience and internet use: a comparative keyword analysis of interviews and online cancer support groups. Soc Sci Med 62(10):2577–2590PubMedCrossRefGoogle Scholar
  35. 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
  36. 36.
    Preece J (2001) Sociability and usability in online communities: determining and measuring success. Behav Info Technol 20(5):347–356CrossRefGoogle Scholar
  37. 37.
    Im EO, Chee W (2008) The use of internet cancer support groups by ethnic minorities. J Transcult Nurs 19(1):74–82PubMedCrossRefGoogle Scholar
  38. 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

Copyright information

© Springer-Verlag 2012

Authors and Affiliations

  • Jacqueline L. Bender
    • 1
    • 3
  • David Wiljer
    • 1
    • 2
    Email author
  • Matthew J. To
    • 1
  • Philippe L. Bedard
    • 4
    • 5
  • Peter Chung
    • 6
    • 7
  • Michael A. S. Jewett
    • 8
    • 9
  • Andrew Matthew
    • 8
    • 10
  • Malcolm Moore
    • 4
    • 5
  • Padraig Warde
    • 6
    • 7
  • Mary Gospodarowicz
    • 6
    • 7
  1. 1.ELLICSR: Health, Wellness and Cancer Survivorship Centre, Toronto General HospitalClinical Services BuildingTorontoCanada
  2. 2.Department of Radiation Oncology, Faculty of MedicineUniversity Health NetworkTorontoCanada
  3. 3.Centre for Global eHealth InnovationUniversity of Toronto and University Health NetworkTorontoCanada
  4. 4.Division of Medical Oncology & Hematology, Princess Margaret Hospital University Health NetworkTorontoCanada
  5. 5.Department of Medical Oncology, Faculty of MedicineUniversity of TorontoTorontoCanada
  6. 6.Radiation Medicine Program, Princess Margaret Hospital University Health NetworkTorontoCanada
  7. 7.Department of Radiation Oncology, Faculty of MedicineUniversity of TorontoTorontoCanada
  8. 8.Division of UrologyPrincess Margaret Hospital University Health NetworkTorontoCanada
  9. 9.Department of Surgery, Faculty of MedicineUniversity of TorontoTorontoCanada
  10. 10.Departments of Surgery and Psychiatry, Faculty of MedicineUniversity of TorontoTorontoCanada

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