An online program to address the psychological needs of men with prostate cancer

1. An online program to address the psychological needs of men with prostate cancer Katherine Chisholm & Prof Marita McCabe Dr Addie Wootten – Melbourne Health Dr Jo Abbott – Swinburne University

2. Funding Partners

3. Background • Prostate cancer: • 2nd most common form of cancer in Australia. • Survival rates very high (around 84%). • Quality of life issues very important. • Common difficulties and concerns for men: • Side effects: especially urinary and erectile dysfunction (persist long after medical treatment) • Relationship concerns. • Psychological distress. • Patient reported needs (Smith et al., 2007) • 54% unmet psychological needs. • 47% unmet sexuality needs. • 25% had moderate or high unmet sexuality needs. Smith, D. P., Supramaniam, R., King, M. T., Ward, J., Berry, M., & Armstrong, B. K. (2007). Age, health, and education determine supportive care needs of men younger than 70 years with prostate cancer. Journal of Clinical Oncology, 25, 2560-2566.

4. Sexual function outcomes • 5-year outcomes of sexual function after radical prostatectomy (Penson et al., 2005) • Penson, D. F., McLerran, D., Feng, Z., Li, L., Albertsen, P. C., Gilliland, F. D., et al. (2008). 5-year urinary and sexual outcomes after radical prostatectomy: results from the Prostate Cancer Outcomes Study. The Journal Of Urology, 173, 1701-1705.

5. Past interventions • Typically targeting – psychological function, sexual function, relationship function, coping/stress management, managing general symptom distress, general communication skills. • Vary in platform (telephone, face-to-face); strategy (group, supportive, educative, counselling); partner inclusive; degree of assistance (self-management versus therapist assisted); single problem versus multi-problem focus. • Very few studies have adequately targeted relationship, sexual, and psychological function in a single intervention.

6. Internet based interventions • Psychological based e-interventions: Anxiety Online; erectile dysfunction (i.e. McCabe et al., 2008), variety of medical conditions (i.e. diabetes, van Bastelaar et al., 2008). • Leykin et al. (2011) reviewed internet interventions for improving psychological well-being in psycho-oncology: • Some of the benefits of internet interventions: • Greater privacy and anonymity • Increased accessibility (especially rural populations) • Time-effective and cost-effective Leykin, Y., Thekdi, S.M., Shumay, D.M., Munoz, R.F., Riba, M., & Dunn, L.B. (2011). Internet interventions for improving psychological well-being in psycho-oncology: review and recommendations. Psycho-Oncology. 10.1002/pon.1993 epub ahead of print on May 24 2011  McCabe, M.P., Price, E., Piterman, L., & Lording, D. (2008). Evaluation of an internet-based intervention for the treatment of erectile dysfunction. International Journal of Impotence Research, 20, 324-330. van Bastelaar, K.M., Pouwer, F., Cuijpers, P., Riper, H., & Snoek, F.J. (2011). Web-based depression treatment for Type 1 and Type 2 diabetic patients. Diabetes Care, 34,320-325.

7. Internet based interventions • Men with prostate cancer have found the internet to be an attractive means to get information on sex (Davison et al., 2004) • Schover et al. (2012) – found that an internet based version of a couples sexual counselling program as effective as brief traditional face-to-face programfor men who have been treated for prostate cancer. • Relied on therapist assistance Davison, B.J., Keyes, M.E., Berkowitz, J., & Goldenberg S.L. (2004). Preferences for sexual information resources in patients treated for early stage prostate cancer with either radical prostatectomy or brachytherapy. BJU International, 93, 965-969. Schover, L.R., Canada A.L., Yuan, Y., Sui, D., Neese, J., Jenkins, R. et al. (2012) . A randomized trial of internet –based versus traditional sexual counseling for couples after localised prostate cancer treatment. Cancer, 118, 500-509.

8. Program aims • To develop and evaluate the effectiveness of an online self-directed psychological intervention for men with prostate cancer. • To target the common problems men experience after treatment for prostate cancer, including: • Management of side effects. • Relationship and sexuality concerns. • Psychological adjustment difficulties.

9. Development of intervention • Program has been developed using a variety of sources. • Literature review – issues faced by men with prostate cancer. • Informed by clinical practice. • Below the Belt: CBT group based psychotherapy program developed by Melbourne Health. • Creative/IT input – 2 prostate cancer survivors who have helped market the program to this group of men. • Pilot tested with prostate cancer survivors.

10. My Road Ahead www.myroadahead.org • The program is delivered over 6 self-directed modules (some basic email contact). • CBT based. • Open access to modules, however recommended sequential order. • The program has been written to support both single men and men in an intimate relationship.

11. Features of the program • Videos from healthcare professionals and prostate cancer survivors. • Online interactive exercises and offline exercises. • Encouraged to include partners in the exercises throughout program and to specific partner information documents. • Mood monitor. • Bookmark subjects of interest. • Personal log book. • Moderated forum: • Topic driven forum for discussion between participants. • Information, questions and social support.

12. Understanding how prostate cancer can impact on a man’s life and emotions • An overview about how prostate cancer and its treatment can affect different areas of a man’s life. • Learn about common emotional reactions to prostate cancer and its treatment, and signs for when these reactions may be of concern. • Learn tips for managing distress.

13. Tools for effective communication and helpful thinking • Education around how communication plays a role in coping with prostate cancer and the side effects. • Begin to develop assertiveness skills to aid communication about sensitive and personal topics. • CBT psychoeducation. • Exercises on identifying unhelpful thoughts, to aid with understanding how thinking influences our mood and actions.

14. Coping with physical changes • Education about physical changes that can occur with prostate cancer. • Learn tools for coping with incontinence – in particular around the anxiety-avoidance cycle. • Learn stress management and relaxation techniques (includes audio files).

15. Sexuality and masculinity • Education around the occurrence and nature of erectile dysfunction after prostate cancer treatment. • Information on traditional male role norms about sexuality and masculinity. • Assist men to identify and challenge any negative thoughts about sexuality and manhood that men might be experiencing.

16. Sexuality and intimacy • Further education around the impact of erectile dysfunction on intimacy. • Assist men to enjoy intimacy and sexual interactions even when an erection is not possible by redefining what good sex means. • Learn and practice specific communication about sex and intimacy. • Information on erectile aids.

17. Living with uncertainty and planning for the future • Help men cope with uncertainty and explore the impact of cancer on beliefs about death and mortality. • Explore specific thoughts about the future and learn tools for coping with fears about cancer recurrence and uncertainty. • Relapse prevention: by reviewing what men have learnt and achieved through the program.

18. My Road Ahead main screen

19. Testing • Men with prostate cancer (n = 20) provided feedback: • Found videos as means to provide information as engaging • Open access to modules • Usability rated as moderate (modifications consequently made) • Limited contact/feedback

20. A Randomised Control Trial

21. Outcome measures • Demographic details, erectile dysfunction aid use, support use, program satisfaction questionnaires • Prostate Cancer Specific Quality of Life Scale • Depression, Anxiety and Stress Scale - short form (DASS-21) • International Index of Erectile Function (IIEF) • Kansas Marital Satisfaction Scale (KMSS) • Communication Patterns Questionnaire - Short Form (CPQ-SF) • Dyadic Sexual Communication Scale – Short Form

22. Recruitment • Men who have received medical treatment for prostate cancer between 6 months and 5 years ago. • Participants can be referred by healthcare providers or self- or peer-referral. • Single men or in a relationship any sexual orientation. • A minimum of 50 participants will be recruited to each of the three study arms.

23. Participant characteristics • Motivated • Not looking for a quick fix (homework etc) • Able to self-monitor (ok with minimal feedback) • Cannot afford treatment or too difficult to access • Prefer the anonymity of internet (sexual issues) • Want to access assistance at flexible times

24. Limitations • Maintaining participants’ motivation • Men might skip to preferred topic areas • Difficulty engaging partners • Language heterosexual orientated

25. Summary • My Road Ahead: • Will allow evaluation of an online self-directive, interactive, and comprehensive intervention. • Is strongly informed by men with prostate cancer and professionals who have clinical skills in this area. • Will demonstrate which aspects of sexual, relationship and psychological functioning are best targeted by the program. www.myroadahead.org