New ADT patients not well informed about possible side effects

The “New” Prostate Cancer InfoLink is utterly unsurprised to learn about a forthcoming paper demonstrating that many men starting treatment with androgen deprivation therapy (ADT) — and their partners — are significantly under-informed about the risk for side effects and adverse effects associated with such therapy.

This paper by Walker et al. is based on checklist surveys carried out among 79 Canadian men who had just been prescribed ADT and 54 of their partners. The prescribed form of ADT was single-agent LHRH therapy (presumably with a brief period of antiandrogen therapy to avoid the androgen “flare reaction” to initiation of LHRH therapy, although the abstract of the paper does not specify this explicitly). The checklists were designed to provide participants with information about common and less common side effects and adverse effects associated with ADT and asked the participants to identify those side effects and adverse effects that they had heard of or were anticipating.

Here are the core study findings:

  • > 70 percent of survey participants were unaware that LHRH-based ADT is associated with risk for anemia, memory problems, loss of body hair, and depression.
  • > 50 percent of survey participants were unaware that LHRH-based ADT is associated with risk for reduced muscle mass, osteoporosis, increased fracture risk, weight gain, genital shrinkage, and gynecomastia.
  • > 20 percent of survey participants (mistakenly) anticipated that LHRH-based ADT was associated with dizziness and itching.

The abstract does not mention whether there were any effects of LHRH-based ADT that patients and their partners were generally well aware of (e.g., loss of libido, hot flashes and/or night sweats). We assume that such information is provided in the full text of the paper.

Walker et al. suggest that such a lack of awareness of the adverse effects and side effects associated with LHRH-based ADT may explain — at least in part — why ADT is associated with significant decreases in the perceived quality of life of patients and their partners. Basically, they say, if the patients don’t know what to expect, they won’t take steps to prevent or reduce the risks associated with LHRH-based ADT.

It is probably a pretty safe assumption that a similar survey carried out in a similar group of patients and their partners in the USA or in other countries would have similar findings (although this needs to be confirmed). Unfortunately, most people do not make any great effort to ensure that they understand the potential side effects associated with drug therapy. Worse than that, many people assume that approved prescription drugs actually have no serious side effects at all. This is a major educational and cultural problem of long standing. It certainly isn’t limited to prostate cancer and ADT.

It would be nice to think (hope?) that every doctor giving a prescription to every man who needed ADT could spend 15 minutes making sure that that patient and his spouse/partner really understood the side effects associated with such therapy and what could be done to prevent them. In today’s high pressure medical care system, that’s just not going to happen, however. Even if it did, a significant percentage of the patients would still either not hear or not be willing and able to process the information being provided.

Many people have struggled for years to find better ways to ensure that patients starting on new forms of long-term drug therapy really did understand the risks and benefits associated with such therapy. In many pharmacies today, when you pick up your prescription it will come with a relatively simple patient information guide, including information about side effects and warnings about serious adverse effects. Did you actually read the last one of these that you were given?

10 Responses

  1. Thanks for the nice comments on our paper. A couple of follow-up papers are either now in press or about to be submitted. We have, for example, surveyed MDs, who prescribe LHRH agonists, about what they consider important or not to tell patients starting ADT. Hopefully that paper will be in press soon.

    One paper that is in press looks at the quality of the peer-reviewed medical literature directed at MDs and explores how open and honest it is about the side effects of ADT. In that paper I put a footnote on the patient information sheets provided by pharmacies in Canada for the LHRH agonists drugs. I found the sheets to be surprisingly uneven in the information they provided and frankly I don’t think they help patients very much. Hopefully the pharmacies in other countries are doing a better job.

  2. I have never had a doctor take the time to explain the side effects of any drug, let alone ADT. If not for the Internet and sites like this one, I would be totally misinformed. Then again, the term “medical care” is really a contradiction in terms. There is no “care” involved — it is only the money that counts.

  3. Dear Jake:

    You really need to find a way to pick your doctors better. I can assure you that mine do talk with me about drugs side effects and many other aspects of “medical care” … but I can also tell you that I take great care to seek out physicians whose goals correlate with my own and are fundamentally based on optimizing quality of life.


    This paper will help doctors as well as their patients. Thank you.

    I am curious whether patients in the US are better informed about ADT, and I suspect they are, based on the following. However, I too have observed that many men on ADT are poorly informed.

    I began ADT within 2 weeks of diagnosis for a challenging case of prostate cancer in December 1999, and I was aware of the main side effects at that time. I was pretty ignorant about the disease back then, so most of the information must have come from my doctors.

    I soon became aware of a non-profit organization dedicated to educating prostate cancer patients about the disease, treatments, side effects, and how to cope with them. I’m not sure the forum’s rules allow mention of the organization, so I will omit the name, but that organization provided and still provides an abundance of key information. The well-known group Us TOO International also has several excellent resources on ADT.

    There are also some great books available. One well-known book, initially published in 2002, not only mentioned the main side effects of ADT but gave important information about monitoring methods, time of onset, countermeasures, the incidence of each main side efffect, and the proportion of patients experiencing varying degrees of burden from the side effect. Another book published in 2010 is outstanding on ADT side effects and coping tactics, in my opinion.

    A long running series of conferences in the US for prostate cancer patients has also provided key information on ADT and side effects. In fact, one is upcoming in a couple of weeks, and the agenda again prominently includes ADT.

    Unfortunately, as Sitemaster suggested, some patients and their spouses want their care on automatic pilot with minimum personal mental involvement.

  5. Dear Jim:

    (1) I think you have entirely (if inadvertently) misrepresented what was in my mind when I wrote the commentary above. I in no way intended to imply or suggest that “some patients and their spouses want their care on automatic pilot.” I did, on the other hand, certainly intend to imply that many people do not have the advantage of your level of education and even your ability to read and write (for all sorts of very good reasons). They also most certainly may not have access to the quality of care you are clearly able to afford.

    (2) In addition, I feel your suggestion that the knowledge of Americans about prostate cancer is in some way superior to that of Canadians (or indeed any other reasonably well informed population) is misguided, as is the suggestion that resources available to Americans are in some way “better” than those in other countries. People in other nations may, however, think quite differently about the issues … for all sorts of very good reasons.

  6. Excellent commentary, Sitemaster. I think there are connections between this sort of possibly insufficient provision of information and the content of your post of several days ago, about doctor-patient relations.

    Here’s a side remark. The word “patient” was first used by Aristotle, in a technical way, like this: An actor is a thing or person who does something by physical activity. A patient is nothing more or less than any entity that is acted upon. Although Aristotle used these terms in his theories of physical science, they were later used to describe the one-way relation from doctor to patient. I hope the relation is a lot more bidirectional today. In Amsterdam I told this to my GP and insisted that he call me “Dr. Berger.” I explained that I had a doctorate degree in philosophy, with maths and physics. He did not like that. I switched doctors, to a person who understood that I don’t stand for one-way relations in such cases.

  7. On the issue of what words mean versus what MDs actually do, I find it rather amusing that the word “doctor” comes from to doc(ēre) → to teach. Meanwhile the word “professor” comes from Latin: a public lecturer, equivalent to prō- (→ pro-) + -fet- (a combining form of fatērī → to acknowledge, declare) + -tor (→ -tor), with tt > ss

    Thus we have the paradox of modern times where “doctors” mostly “profess” (rather than actually “teach”) and professors, at least the good ones, mostly “teach” (rather than merely “profess”).

    Since I am a “professor” (PhD) embedded in a clinical medical department, I get to see this paradox played out on a rather regular basis.

  8. @Richard. That’s excellent. I never thought of medical doctors in this way, although I should have! I did know about ‘docere,’ so how could I have missed that? I think Mr. Thomas from Aquino was called ‘Doctor Angelicus,’ and knew that he was no medical doctor. Being a professor myself, I did know that meaning. It gets worse. In some Germanic countries, a teacher who is not a professor is called a ‘docent.’ So don’t Professors have anything to say? I had better stop there, before my Dutch colleagues see what I think about that. Not the Swedish ones, mind you.

  9. The question of what men are told (or, perhaps, what they recall being told) by their medical advisors is always of interest to me.

    I ran a small poll on my site a year or two back putting some questions (formulated by a well known “internet” doctor who felt that doctors were unjustly criticised) and here are the results.

  10. This is a topic near and dear to my heart, and a major focus of much of my advocacy efforts. Through serving on the Prostate Cancer Patient Advocates Committee at UCSF, two significant efforts have been produced.

    (1) UCSF patient advocates and doctors from surgery, radiation and medical oncology have produced a pamphlet for patients focused directly on this issue: “Hormone therapy for prostate cancer — a patient guide.”

    When I first raised this in committee over three years ago, both Peter Carroll and Mack Roach — two very eminent doctors in the field — both acknowledged that physicians in their practices do a lousy job introducing hormone therapy to patients and welcomed the idea. One of the reasons it took so long to produce the booklet was because of push back from the medical oncologists who resented the “interference” and stalled then watered down our early drafts after we had rejected the poor information sheet they occasionally distributed.

    (2) I have also been campaigning for a special ADT Support Clinic for more than 2 years. Initially this was referred to Symptom Management who claimed they had no funding for a special support group. About a year ago, one of the younger medical oncologists picked up the ball and has found funding to establish a specialized ADT clinic that will debut very shortly.

    Although not directly related, I have also instigated a very active exercise intervention program for all cancers at UCSF.

    If any hospitals, medical offices, researchers or advocates want more information, please do not hesitate to contact me.

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