BERKELEY, CA (UroToday.com) - At any time in North America some 600,000 men are on androgen deprivation therapy (ADT) to treat prostate cancer (PCa).[1] In a series of studies, my colleagues and I have been exploring how patients understand and adapt to this therapy. In one recent paper[2] we show that PCa patients who have been prescribed ADT are poorly informed about the side effects of the LHRH agonists commonly prescribed in the industrial world for ADT.
The common name used for ADT by health care providers and patients alike is “hormone therapy.” Previously we suggested that this euphemistic simplification may mislead patients about the reality of this treatment.[3] Our recent paper in the European Journal of Cancer Care used an anonymous online questionnaire to find out, among other things, whether our concern was valid.
Our paper was built upon surveys completed by 690 adult males and females recruited through various cancer-related websites. It was evident from these surveys that many men, including those who were actively being treated for PCa, had little understanding that “hormone therapy” entails an endocrine ablation rather than an endocrine augmentation. We found that many had no idea that androgen deprivation was tantamount to chemical castration.
An interesting finding was that the men and women in our study had very different understandings about what the side effects of ADT meant, overall. Significantly fewer women than men, for instance, were likely to consider a man on an androgen suppressing treatment (however it was labeled) as “less of a man.” More men were likely to consider a male, who was castrated compared to one on “hormone therapy” as emasculated. This was true despite the fact that the physiological and psychological effects are ostensibly the same. Similarly, significantly more men said that they would be willing to accept “hormone therapy” than “castration” if their physician recommended it to treat PCa.
One might suppose that these results justify using the vague term “hormone therapy” as a proxy for ADT. Calling the treatment “hormone therapy” rather than “chemical castration” or “androgen deprivation” avoids the stigma of those other terms, which our study shows are more readily linked to the idea of emasculation.
In a separate study, recently submitted for publication, we explored what urologists and oncologists in Canada (N=75) consider essential information to tell patients, who are starting on ADT.[4] There we found an enormous amount of variation between what side effects physicians felt were essential, versus nonessential, to warn their patient about. In addition, there was little agreement between the patients and their physicians about what constituted important side effects to be aware of. Thus, for example, from a medical perspective, the loss of body hair was of no consequence and most physicians did not consider it worth warning patients about. However from a psychological perspective, many patients found this visible marker on androgen deprivation distressing (unpubl. data).
I am hesitant to fault physicians who fear that a more precise label for ADT might stress their patients. They may be trying to avoid producing negative placebo effects. Perhaps they even worry that their patients might refuse treatment if fully informed about the side effects of LHRH agonists. Using the vague term “hormone therapy” and understating the side effects of this treatment may thus be well intended. However, my colleagues and I know of no data to show that patients commencing this treatment are indeed better off in the long run by being uninformed about ADT’s side effects. In fact, in another submitted manuscript, we assessed a preemptive educational intervention for patients starting on ADT.[5] There we found that the patients favored getting as much information as possible about ADT and its side effects at the onset of treatment.
These results overall raise the concern that calling ADT “hormone therapy” and not telling patients about the majority of well-established side effects of LHRH agonists violates the ethical principle of informed consent. The big question now is how to change clinical practice so that health care providers will do more to prepare their patients starting on ADT for the physical and mental impact of this treatment.
References:
- Smith MR 2007 Androgen deprivation therapy for prostate cancer: New concepts and concerns. Curr. Opin. Endocrinol. Diabetes. Obes., 14:247–254.
- Walker L, Tran S, Wassersug RJ, Thomas B & Robinson J 2012 Patients and partners lack knowledge of androgen deprivation therapy side effects. Urol. Oncol., [Epub ahead of print] Jan 25, 2012.
- Cushman MA, Phillips JL & Wassersug RJ 2010 The language of emasculation: Implications to cancer patients. Int. J. Mens Health, 9:3-25.
- Tran S, Walker LM, Wassersug RJ, Matthew AG, McLeod DL & Robinson JW (submitted) What do Canadian physicians believe patients should know about androgen deprivation therapy?
- Walker LM, Hampton AJ, Wassersug RJ, Thomas BC & Robinson JW (submitted) Androgen deprivation therapy and intimacy: A pilot educational intervention to help prostate cancer patients and their partners maintain intimacy in the face of ADT.
Written by:
Richard Wassersug, PhD as part of Beyond the Abstract on UroToday.com. 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.
Department of Urologic Sciences, University of British Columbia, Vancouver, BC, Canada and the Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Vic., Australia
