Katherine Chisholm & Prof Marita McCabeDr Addie Wootten – Melbourne HealthDr Jo Abbott – Swinburne University

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

Funding Partners

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.

Sexual function outcomes

Sexual function Baseline 6 m 12 m 24 m 60 m

Erections firm enough for intercourse?

No 17 89 81 75 71

Yes 81 9 17 22 28

How big a problem is sexual function?

No problem 57 12 15 18 23

Small 23 18 24 28 31

Moderate to big

20 70 61 54 46

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.

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.

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.

Internet based interventions

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 program for 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.

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.

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.

My Road Ahead

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.

www.myroadahead.org

Features of the programVideos 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.

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.

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.

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).

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.

Sexuality and intimacyFurther 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.

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.

My Road Ahead main screen

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

A Randomised Control Trial

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

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.

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

Limitations Maintaining participants’ motivation

Men might skip to preferred topic areas

Difficulty engaging partners

Language heterosexual orientated

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