Beyond the Abstract - Patients and partners lack knowledge of androgen deprivation therapy side effects, by Susan Tran, BA (Hons), et al

BERKELEY, CA ( - Androgen deprivation therapy (ADT) is currently the mainstay treatment for men with advanced prostate cancer (PCa). Approximately, half a million men in North America at any time are on this treatment. Many of these men now live in excess of 10 years without any overt cancer symptoms but with castrate levels of testosterone. In their hypogonadal state they commonly experience sexual dysfunction (e.g., erectile dysfunction, loss of libido, genital shrinkage), bodily feminization (e.g., weight gain, breast development, loss of body hair), and are at increased risk of developing serious medical conditions (e.g., osteoporosis, diabetes, cardiovascular disease). Patients, as well as their partners, repeatedly report experiencing negative changes in their relationships, such as reduced intimacy, partner distress, and erosion of the spousal bond subsequent to starting ADT. Overall, ADT significantly decreases the quality of life of both patients and their partners.

bta tranThrough our research and interaction with patients and their partners, we suspected that there might be a connection between how well prepared patients (and partners) were before commencing ADT and the impact of the treatment on their quality of life. Our initial step was to explore how much patients starting on ADT, and their partners, knew about the physiological and psychosocial impact of the treatment. Our suspicion was confirmed; they did not know much. The Walker et al. (2012) paper reveals the significant lack of knowledge of common side effects associated with ADT among patients and partners. Over 70% of participants were unaware of anemia, changes in memory, loss of body hair, breast discomfort, and depression. In addition, up to 28% of those surveyed mistakenly believed that itching, dizziness, insomnia, nausea, and headache were side effects of ADT.

A disturbing fact worth noting is that all patients in our study received a consultation with their prescribing physician regarding ADT just a few days prior to completing the survey. This led us to wonder what side effects of ADT the medical community believes are important for patients to know about. We are currently surveying Canadian urologists and oncologists asking what they consider to be essential information about ADT side effects to relay to patients commencing this treatment. We are also asking what management strategies they endorse for these side effects.

Although both patients and partners knowledge of ADT side effects was collectively poor, there were some intriguing sex differences in their knowledge as well. Partners more accurately identified the affective items (i.e., depression and change in emotions) than did patients, whereas patients were significantly more aware of genital shrinkage as an ADT side effect than were their partners. The fact that both patients and partners were exposed to the same information, but each were attentive to and retained different pieces of that information, reveals the importance of having partners present during discussions of ADT side effects. If both patient and partner are present, they can later share with each other the pieces of information that each recalls.

Encouragingly, the practice of including partners in consultations on ADT was seen as important, if not essential, by over 80% of the urologists and oncologists we surveyed in another of our yet to be published studies. Indeed it has been well established that the psychological burden of ADT can be even greater on partners than the patients themselves (Elliot et al., 2010; Kornblith et al., 1994).1 Attention to the partners’ well-being is important for that reason alone. However, it is also important because, as pointed out by Elliot et al. (2010)2 and Kim et al. (2008),3 partners’ distress in this situation is predictive of men’s physical health in the long run. Overall our research shows that more needs to be done to provide supportive care, not just to PCa patients, but also their partners when patients begin ADT. Particularly, we suggest that preemptive educational programs, much like those being offered to patients starting chemotherapy, should be offered to patients starting ADT and their partners.


  1. Kornblith, A. B., Herr, H. W., Ofman, U. S., Scher, H. I., & Holland, J. C. (1994). Quality of life of patients with prostate cancer and their spouses. The value of a data base in clinical care. Cancer, 73(11), 2791-2802.
  2. Elliot, S., Latini, D. M., Walker, L. M., Wassersug, R. J., Robinson, J. W., & the ADT Survivorship Working Group. (2010). Androgen deprivation therapy for prostate cancer: Recommendations to Improve Patient and Partner Quality of Life. Journal of Sexual Medicine, 7(9), 2996-3010. DOI: 10.1111/j.1743-6109.2010.01902.x
  3. Kim, Y., Kashy, D. A., Wellisch, D. K., Spillers, R. L., Kaw, C. K., & Smith, T. G. (2008). Quality of life of couples dealing with cancer: Dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Annual Behavioural Medicine, 35, 230-238. DOI 10.1007/s12160-008-9026-y



Written by:
Susan Tran, Richard J. Wassersug, Lauren M. Walker, Bejoy Thomas, and John W. Robinson as part of Beyond the Abstract on This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.


Patients and partners lack knowledge of androgen deprivation therapy side effects - Abstract

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