BERKELEY, CA (UroToday.com) - This article is one of a series of studies that my colleagues and I have published in the last year related to helping prostate cancer (PCa) patients recognize and adapt to the side effects of androgen deprivation therapy (ADT). In the first et article,[1] we document the core problem—both patients and their partners are poorly informed about the side effects of ADT. We argue that patients are unlikely to take timely action to manage adverse effects if they don’t know about them in the first place. Similarly, since ADT can alter the mood, personality, and sexual performance of patients, their partners need to know about the impact of ADT in order to maintain a strong spousal partnership with good quality of life for both of them.[2]
We believe that the common euphemism for ADT, “hormone (or hormonal) therapy,” may be part of the problem.[3] This language is vague and misleads a number of patients into thinking that they are getting a supplement to their normal hormones rather than a hormone ablation.[4]
We have extended that work by surveying physicians about what they feel is essential to tell their patients starting on LHRH agonists, and what they feel should be avoided.[5] The variation among physicians was enormous. Whereas there are well-delineated guidelines for when physicians should prescribe LHRH agonists, there are no such guidelines (or even an informal consensus) about what doctors should tell patients starting on this treatment.
This realization, in turn, led us to wonder about the quality and comprehensiveness of information on ADT directed at the physicians themselves. In McLeod et al..,[6] we examined the peer-reviewed medical literature on side effects of, and alternatives to, LHRH agonists for ADT. We documented that the medical literature typically understated the adverse effects of ADT and was particularly thin in acknowledging that these drugs have a communicable impact on the psychological well-being of patients’ partners. It was established almost 20 years ago that when a PCa patient’s testosterone descends to castrate levels, his partner is the one most likely to become depressed.[7] Yet the medical literature on ADT largely ignores this fact—particularly in papers whose publication was supported by the LHRH pharmaceutical industry.[6]
Against this background, the Ogah and Wassersug (2012) paper[8] simply asks if patients—and, for that matter, their health care providers—can find reliable and up-to-date information about ADT on the Internet. We didn’t look at all URLs that mentioned ADT side effects or alternatives to LHRH agonist drugs. Instead we started with strict criteria based on what the public would consider to be reliable and objective sites. Thus we excluded commercially owned sites, individual websites, and blogs in favor of sites owned by well-recognized, non-profit organizations, such as the American Urological Association.
We analyzed a total of 43 sites. What we found was that only a third presented some clinically established alternatives to LHRH agonists for ADT (such as LHRH antagonists). Less than half of the sites had a time stamp indicating when they were last updated, and, in most cases, the data we tracked on ADT had not, in fact, been updated. Since publishing Ogah and Wassersug (2012)[8] we have since learned that one of the sites we included should not have been listed as it has industrial backing. This testifies to the difficultly of finding truly objective information on the Internet when it comes to living with ADT.
What emerges is an overall dismal picture of the availability of good quality, comprehensive information about managing ADT for everyone—patients, partners, and health care providers alike. There are at any time, in North America, some 600 000 PCa patients on ADT,[9] and approximately half of all PCa patients at some time in their lives will be offered ADT. This is a treatment that has consistently and repeatedly been shown to lower the quality of life for both PCa patients and their partners. Given the many barriers to getting reliable and up-to-date information about ADT, this is truly an area where much more needs to be done in the way of knowledge translation.
References:
- Walker, L., Tran, S., Wassersug, R.J., Thomas, B., Robinson, J. 2012 Patients and partners lack knowledge of androgen deprivation therapy side effects. Urol. Oncol., [Epub ahead of print]
- Elliott, S., Latini, D.M., Walker, L.M., Wassersug, R., Robinson, J.W., ADT Survivorship Working Group 2010 Androgen deprivation therapy for prostate cancer: Recommendations to improve patient and partner quality of life. J. Sex Med., 7(9):2996-3010.
- Cushman, M., Phillips, J.L., Wassersug, R.J. 2010 The language of emasculation: Implications for cancer patients. Int. J. of Men’s Health, 9(1):3-25.
- Rot, I., Ogah, I., Wassersug, R.J. 2012 The language of prostate cancer treatments and implications for informed decision making by patients and their partners. Eur. J. Cancer Care, [Epub ahead of print].
- Tran, S., Walker, L.M., Wassersug, R.J., Matthew, A.G., McLeod, D.L., Robinson, J.W. 2012 What do physicians believe patients should know about androgen deprivation therapy?
- Phillips, J.L, Wassersug, R.J., McLeod, D.L. 2012 Systemic bias in the medical literature on androgen deprivation therapy and its implication to clinical practice. Int. J. Clin. Pract., 66(12):1189-96.
- 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 database in clinical care. Cancer, 73(11):2791-802.
- Ogah, I., Wassersug, R.J. 2012 How reliable are "reputable sources" for medical information on the internet?—The case of hormonal therapy to treat prostate cancer. Urol. Oncol., [Epub ahead of print] .
- Smith, M.R. 2007 Androgen deprivation therapy for prostate cancer: new concepts and concerns. Curr Opin Endocrionol Diabetes Obes., 14(3): 247-54.
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
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