Buried within a retrospective study about what prostate cancer patients in Australia recall about their cancer treatments are some disturbing data on hormone (aka androgen deprivation) therapy. The study ran from 2009 to 2019. The data of particular interest are from 221 respondents, who were asked about their treatment history and provided enough information that their recollections could be compared with their actual medical records.
The men were on average 76 years old and had been treated on average six years earlier (range 0 to 18 years). Their recall of their treatment history was overall pretty good, ranging from a high of 96% (for chemo) to a low 66% (for ADT). Notably, this low recall accuracy for ADT means that a third of the respondents could not recall correctly whether they had or had not been on ADT. In fact, over a quarter asserted that they had not had ADT when their medical records showed they had. The patients who recalled accurately being on ADT were overall: 1) younger, 2) had been on ADT more recently, and 3) had been treated solely by ADT.
The author suggested that overall poor recall about ADT may be because the patients viewed ADT as a minor “passive treatment” and they did not consider it (or were not informed about it) being a major part of the effort to control their cancer.
The authors conclude their paper saying because “recall is indicative of patient understanding [of treatment and side effect management], our results suggest that there is an opportunity for further improvement particularly in the areas of hormonal treatment….“ We couldn’t agree more. The ability of patients and those around them to maintain a good quality of life when the patients are on ADT is predicated on the fact that the patients know they on that treatment! It is hard to help patients recognize and adapt to ADT, if they do not even know they are getting that treatment.
It’s hard to imagine anything more discouraging about the concept of informed consent, when there are patients on certain treatments, who do not even know they are getting that treatment. Hopefully the situation, in terms of educating patients about treatment options, side effects, and outcomes, has improved in Australia and elsewhere since the time when the men in this study where getting their cancer treatments.
To read the full paper, see: https://www.sciencedirect.com/science/article/pii/S2405632422000427
Reference:
Brown, A., Tan, A., Anable, L., Callander, E., Lourenco, R. D. A., & Pain, T. (2022). Perceptions and Recall of Treatment for Prostate Cancer: A Survey of Two Populations. Technical Innovations & Patient Support in Radiation Oncology.