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?