THE "NEW" PROSTATE CANCER INFOLINK

Data from a small, recently published pilot study offers some interesting information about the impact of providing good quality educational information to patients about options for the management of prostate cancer before they were ever given their biopsy (i.e., before their diagnosis of cancer is a certainty).

Zeliadt et al. thought that telling patients about the multiple, possible treatment options pre-biopsy (rather than after diagnosis) might help patients to have time to become more fully engaged in the decision-making process. However, they also wanted to to be sure that this strategy was not associated with any increase in risk for harm (by, for example, increasing patients’ anxiety about the possible diagnosis and need for treatment). They therefore put together a small, pilot study to explore the risks associated with this strategy. 

A total of 29 men who were referred to their center for biopsy (because of an elevated PSA level and/or a suspicious findings on digital rectal examination) were randomly assigned to receive either

• The clinic’s customary biopsy instruction sheet (i.e., ususal care) or
• A pre-biopsy educational package containing the same biopsy instruction sheet plus a booklet about the biopsy procedure and a prostate cancer management decision aid written for newly diagnosed men that described possible management options in detail (i.e., full educational care).

Note that the full text of this article can be accessed on line and includes the fact that the brochure about treatment options was the one developed by the University of Michigan and entitled “Making the choice: deciding what to do about early stage prostate cancer.” This brochure specifically includes information about wchful waiting and active sureveillance as well as other “standard” forms of treatment. 

Zeliadt et al. then set out to determine the patients’ anxiety levels and the quality of life scores over time.

Here are their findings:

• Out of 53 men invited to participate in the pilot study 33 agreed to be randomized.
• Four men refused to participate further when telephoned by the investigators, leaving 29 active participants, of whom
  • 18 were randomized to the educational care arm.
  • 11 were randomized to the usual care (biopsy information only) arm.
• 15/18 men (83 percent) randomized to the educational care arm confirmed they used the full range of materials.
• During the time period that men were awaiting thie biopsy procedure
  • Anxiety scores were similar for men in both groups but trended lower in the educational care  group.
  • The average prostate-specific anxiety instrument score was 41.2 for men in the educational group compared to 51.7 in the usual care group (p = 0.13).
  • Men in the educational care group reported significantly better overall quality of life (QoL).
  • Average QoL scores were 76.4 for men in the educational care group compared to 48.5 in the usual group (p = 0.01).
• Among the small number of men who went on to actually be diagnosed with prostate cancer
  • The men in the educational care group said they felt better informed about the risks and side effects of each treatment option compared to the men in the usual care group (p = 0.07).
• In qualitative discussions, the men who receieved educational care reported that
  • They found the pre-biopsy materials to be helpful.
  • Having information about possible treatment options reduced their anxiety.
  • 2/18 men (11 percent) did not want to think about treatment options until after they knew their biopsy results.

Zeliadt et al. conclude that, in this small, pilot study, “pre-biopsy education about potential treatment options was generally well received by patients, appeared to be beneficial to men who went on to be diagnosed, and did not appear to increase anxiety unnecessarily among those who had a negative biopsy.”

Providing sound, neutral, educational material about potential management options to men at risk for a diagnosis of prostate cancer prior to biopsy is not exactly a major challenge. Here in the USA, the Agency for Healthcare Research and Quality (AHRQ) developed a relatively high quality guide  for patients about the management of localized prostate cancer some time ago. AHRQ states that this guide is only appropriate for men who have actually been diagnosed with prostate cancer, but we don’t really know why that would be the case (particularly since the guide also deals with the pros and cons of “screening” for prostate cancer).

The “New” Prostate Cancer InfoLink is actually of the opinion that since all men are at some degree of risk for a diagnosis of prostate cancer at some time during their lifespan, they should be getting information about this risk and their potential treatment options long before they ever know that they actually need a biopsy. (Forewarned is forearmed!)

Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk | Tagged: biopsy, education, information, options |