Journal of Cancer Survivorship

, Volume 12, Issue 1, pp 1–9 | Cite as

Face-to-face vs. online peer support groups for prostate cancer: A cross-sectional comparison study

  • Johannes Huber
  • Tanja Muck
  • Philipp Maatz
  • Bastian Keck
  • Paul Enders
  • Imad Maatouk
  • Andreas IhrigEmail author



As social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG.

Patients and methods

We performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life.


We analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001).


Both modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making.

Implications for cancer survivors

Older patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress.

Trial registration, number DRKS00005086


Online support group Face-to-face support group Self-help group Decision-making Peer support Prostate cancer 



We thank the BPS and German Cancer Aid for endorsing our project. The Foundation of the Federal Bank of Baden-Wuerttemberg supported this study (grant 2012030055). Ltd. provided language assistance.

Compliance with ethical standards

Transparency declaration

The lead author affirms that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.

Previous presentation

This study is presented in part at the Annual Meeting of the German Association of Urology, Düsseldorf, Germany, October 1–4, 2014; International Psycho-Oncology Society Congress, Lisbon, Portugal, October 20–24, 2014; Annual Meeting of the European Association of Urology, Madrid, Spain, March 20–24, 2015; and Annual Meeting of the American Association of Urology, New Orleans, LA, USA, May 15–19, 2015.


The study received financial support by the Foundation of the Federal Bank of Baden-Wuerttemberg (grant 2012030055).

Conflict of interest

All authors have completed the ICMJE uniform disclosure form at and declare no support from any organization for the submitted work, no financial relationships with any organizations that might have an interest in the submitted work in the previous 3 years, and no other relationships or activities that could appear to have influenced the submitted work. Dr. Huber reports personal fees from Janssen and grants and non-financial support from Takeda, outside the submitted work. Dr. Keck reports advisory works and financial support (congresses) from Astellas, Janssen, Novartis, Pfizer, General Electric, Bristol-Meyers Squibb, and Sanofi, outside the submitted work. Mr. Enders is a member of the Prostate Cancer Patient Support Organization of Germany (BPS).

Ethical approval

The Ethics Committee of the University of Dresden approved our study protocol (EK 75032013). All procedures performed were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11764_2017_633_MOESM1_ESM.pdf (147 kb)
ESM 1 (PDF 147 kb)


  1. 1.
    Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85:365–76.CrossRefPubMedGoogle Scholar
  2. 2.
    Andel GV, Bottomley A, Fosså SD, et al. An international field study of the EORTC QLQ-PR25: a questionnaire for assessing the health-related quality of life of patients with prostate cancer. Eur J Cancer. 2008;44:2418–24.CrossRefPubMedGoogle Scholar
  3. 3.
    Bender JL, Katz J, Ferris LE, et al. What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities. Patient Educ Couns. 2013;93:472–9.CrossRefPubMedGoogle Scholar
  4. 4.
    Bisson JI, Chubb HL, Bennett S, et al. The prevalence and predictors of psychological distress in patients with early localized prostate cancer. BJU Int. 2002;90:56–61.CrossRefPubMedGoogle Scholar
  5. 5.
    Chewning B, Bylund CL, Shah B, et al. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86:9–18.CrossRefPubMedGoogle Scholar
  6. 6.
    Cocks K, King MT, Velikova G, et al. Evidence-based guidelines for interpreting change scores for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. Eur J Cancer. 2012;48:1713–21.CrossRefPubMedGoogle Scholar
  7. 7.
    Davison KP, Pennebaker JW, Dickerson SS. Who talks? The social psychology of illness support groups. Am Psychol. 2000;55:205–17.CrossRefPubMedGoogle Scholar
  8. 8.
    De Sousa A, Sonavane S, Mehta J. Psychological aspects of prostate cancer: a clinical review. Prostate Cancer Prostatic Dis. 2012;15:120–7.CrossRefPubMedGoogle Scholar
  9. 9.
    Deetjen U, Powell JA. Informational and emotional elements in online support groups: a Bayesian approach to large-scale content analysis. JAMIA. 2016;23:508–13.PubMedGoogle Scholar
  10. 10.
    Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res. 1997;29:21–43.PubMedGoogle Scholar
  11. 11.
    Feinberg I, Frijters J, Johnson-Lawrence V, et al. Examining associations between health information seeking behavior and adult education status in the U.S.: an analysis of the 2012 PIAAC Data. PLoS One. 2016;11:e0148751.CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Galea S, Tracy M. Participation rates in epidemiologic studies. Ann Epidemiol. 2007;17:643–53.CrossRefPubMedGoogle Scholar
  13. 13.
    Gottlieb BH, Wachala ED. Cancer support groups: a critical review of empirical studies. Psychooncology. 2007;16:379–400.CrossRefPubMedGoogle Scholar
  14. 14.
    Grégoire I, Kalogeropoulos D, Corcos J. The effectiveness of a professionally led support group for men with prostate cancer. Urol Nurs. 1997;17:58–66.PubMedGoogle Scholar
  15. 15.
    Hinz A, Singer S, Brähler E. European reference values for the quality of life questionnaire EORTC QLQ-C30: results of a German investigation and a summarizing analysis of six European general population normative studies. Acta Oncol. 2014;53:958–65.CrossRefPubMedGoogle Scholar
  16. 16.
    Huber J, Ihrig A, Peters T, et al. Decision-making in localized prostate cancer: lessons learned from an online support group. BJU Int. 2011;107:1570–5.CrossRefPubMedGoogle Scholar
  17. 17.
    Huber J, Streuli JC, Lozankovski N, et al. The complex interplay of physician, patient, and spouse in preoperative counseling for radical prostatectomy: a comparative mixed-method analysis of 30 videotaped consultations. Psychooncology. 2016;25:949–56.CrossRefPubMedGoogle Scholar
  18. 18.
    Huber J, Maatz P, Muck T, et al. The effect of an online support group on patients’ treatment decisions for localized prostate cancer: an online survey. Urol Oncol. 2017;35:37.e19–28.CrossRefGoogle Scholar
  19. 19.
    Ihrig A, Keller M, Hartmann M, et al. Treatment decision-making in localized prostate cancer: why patients chose either radical prostatectomy or external beam radiation therapy. BJU Int. 2011;108:1274–8.CrossRefPubMedGoogle Scholar
  20. 20.
    Klemm P, Hardie T. Depression in internet and face-to-face cancer support groups: a pilot study. Oncol Nurs Forum. 2002;29:E45–51.CrossRefPubMedGoogle Scholar
  21. 21.
    Kroenke K, Spitzer RL, Williams JB, et al. An ultra-brief screening scale for anxiety and depression: the PHQ-4. Psychosomatics. 2009;50:613–21.PubMedGoogle Scholar
  22. 22.
    Löwe B, Wahl I, Rose M, et al. A 4-item measure of depression and anxiety: validation and standardization of the Patient Health Questionnaire-4 (PHQ-4) in the general population. J Affect Disord. 2010;122:86–95.CrossRefPubMedGoogle Scholar
  23. 23.
    National Comprehensive Cancer N. Distress management. Clinical practice guidelines. J Natl Compr Cancer Netw. 2003;1:344–74.CrossRefGoogle Scholar
  24. 24.
    Oliffe JL, Chambers S, Garrett B, et al. Prostate cancer support groups: Canada-based specialists’ perspectives. Am J Mens Health. 2015;9:163–72.CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Perez MA, Skinner EC, Meyerowitz BE. Sexuality and intimacy following radical prostatectomy: patient and partner perspectives. Health Psychol. 2002;21:288–93.CrossRefPubMedGoogle Scholar
  26. 26.
    Ramsey SD, Zeliadt SB, Arora NK, et al. Access to information sources and treatment considerations among men with local stage prostate cancer. Urology. 2009;74:509–15.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Resnick MJ, Lacchetti C, Bergman J, et al. Prostate cancer survivorship care guideline: American Society of Clinical Oncology Clinical Practice Guideline Endorsement. J Clin Oncol. 2015;33:1078–85.CrossRefPubMedGoogle Scholar
  28. 28.
    Setoyama Y, Yamazaki Y, Nakayama K. Comparing support to breast cancer patients from online communities and face-to-face support groups. Patient Educ Couns. 2011;85:e95–e100.CrossRefPubMedGoogle Scholar
  29. 29.
    Sidana A, Hernandez DJ, Feng Z, et al. Treatment decision-making for localized prostate cancer: what younger men choose and why. Prostate. 2011;72:58–64.CrossRefPubMedPubMedCentralGoogle Scholar
  30. 30.
    Singh JA, Sloan JA, Atherton PJ, et al. Preferred roles in treatment decision making among patients with cancer: a pooled analysis of studies using the Control Preferences Scale. Am J Manag Care. 2010;16:688–96.PubMedPubMedCentralGoogle Scholar
  31. 31.
    Stanton AL, Thompson EH, Crespi CM, et al. Project connect online: randomized trial of an internet-based program to chronicle the cancer experience and facilitate communication. J Clin Oncol. 2013;31:3411–7.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Treadgold CL, Kuperberg A. Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. J Clin Oncol. 2010;28:4842–9.CrossRefPubMedGoogle Scholar
  33. 33.
    Valero-Aguilera B, Bermúdez-Tamayo C, García-Gutiérrez JF, et al. Information needs and Internet use in urological and breast cancer patients. Support Care Cancer. 2013;22:545–52.CrossRefGoogle Scholar
  34. 34.
    Van Gelder MMHJ, Bretveld RW, Roeleveld N. Web-based questionnaires: the future in epidemiology? Am J Epidemiol. 2010;172:1292–8.CrossRefPubMedGoogle Scholar
  35. 35.
    Van Uden-Kraan CF, Drossaert CHC, Taal E, et al. Participation in online patient support groups endorses patients’ empowerment. Patient Educ Couns. 2009;74:61–9.CrossRefPubMedGoogle Scholar
  36. 36.
    Wald HS, Dube CE, Anthony DC. Untangling the Web—the impact of Internet use on health care and the physician-patient relationship. Patient Educ Couns. 2007;68:218–24.CrossRefPubMedGoogle Scholar
  37. 37.
    Walsh MC, Trentham-Dietz A, Schroepfer TA, et al. Cancer information sources used by patients to inform and influence treatment decisions. J Health Commun. 2010;15:445–63.CrossRefPubMedGoogle Scholar
  38. 38.
    White VM, Young M-A, Farrelly A, et al. Randomized controlled trial of a telephone-based peer-support program for women carrying a BRCA1 or BRCA2 mutation: impact on psychological distress. J Clin Oncol. 2014;32:4073–80.CrossRefPubMedGoogle Scholar
  39. 39.
    Xu Y, Testerman LS, Owen JE, et al. Modeling intention to participate in face-to-face and online lung cancer support groups. Psychooncology. 2014;23:555–61.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2017

Authors and Affiliations

  1. 1.Department of Urology, Medical Faculty Carl Gustav CarusTU DresdenDresdenGermany
  2. 2.Department of UrologyUniversity Hospital ErlangenErlangenGermany
  3. 3.Prostate Cancer Patient Support Organization of Germany (BPS)BonnGermany
  4. 4.Division of Psychooncology, Department of General Internal Medicine and PsychosomaticHeidelberg University HospitalHeidelbergGermany

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