“Please take notes if you want to, but I’m going to give you an audio-recording of this meeting to take home”

For the majority of newly diagnosed prostate cancer patients, the first meeting with their physician after diagnosis presents them with more information than they are able to assimilate easily … and many patients don’t have the necessary scientific or medical background to understand everything they are being told — even if they hear it all.

We often tell patients to take an audio-recording device (and a second set of ears, i.e., one’s wife or partner) to such meetings with one’s doctor(s) and to ask the doctor(s) if it would be okay to record the  consultation so that the patient can listen to it again (and more than once if necessary) after the meeting, so as to remind himself what he was actually told (as opposed to what he remembers and thought he was told).

In what we see as a very interesting twist on this recommendation, a research team in Edinburgh, Scotland (Good et al.) has now published a paper in The Surgeon that discusses the benefits of the audio-recording of such consults by the clinical team, who then provide a copy of that recording to the patient to take away with him.

Specifically, Good et al. set out to determine whether audio-recording consults and provision of the audio-recording on CD to the patients would have any effect on long-term decision regret, quality of life, satisfaction, and the reasons for such satisfaction among patients undergoing management of prostate cancer. The audio-recordings all included discussion of the results of the patients’ biopsies and other test data (PSA, MRI, bone scan, etc.) and their treatment options (including possible procedures, expected outcomes, and potential complications). All patients were counseled by a single urologist. In addition, a control group of patients were counseled by the same urologist in the same manner, but the patients were not given audio-recordings. Members of both groups were all also offered counseling by a medical oncologist (a standard practice at this institution).

Eligible patients in the audio-recording group all met the following criteria:

  • A diagnosis of prostate cancer
  • Willingness to have an audio-recording made of their consultation
  • Subsequent treatment by laparoscopic radical prostatectomy (LRP), brachytherapy, external beam radiotherapy, or active surveillance

Eligible patients in the control group needed to meet only the first and third criteria above. Patients were excluded from either the audio-recording group or the control group if they received no subsequent, active management for their prostate cancer. All eligible patients were asked to complete a follow-up questionnaire at 12 months after initiation of treatment.

Here are the key findings of the research team:

  • 58 patients received the audio-recording, of whom 40 (69 percent) returned completed questionnaires.
  • 45 patients in the control group did not receive an audio-recording, of whom 27 (60 percent) returned completed questionnaires.
  • Patients in the audio-recording and the control groups were not statistically different based on age, ethnicity, marital status, employment status, age at leaving education, and treatment received.
  • The D’Amico risk status was similar in the two groups.
    • 33 percent low risk in both groups.
    • 58 percent intermediate risk in the audio-recording group and 52 percent in the control group.
    • 10 percent high risk in the audio-recording group and 15 percent in the control group.
  • Average (mean) follow-up was 11.5 months in the audio-recording group and 12.8 months in the control group.
  • With respect to the two primary endpoints
    • Functional outcome scores and symptom scores were not statistically different for the audio-recording and the control groups.
    • There was a trend toward lower urinary symptoms and lower bowel symptoms among the audio-recording group but it was only statistically significant for bowel symptoms.
    • There was  a lower mean decision regret score among the audio-recording group (11/100) than the control group (19/100) (p < 0.04).
    • 14/27 patients (52 percent) in the control group expressed regret compared to 19/40 (48 percent) for the audio-recording group.
    • 4 patients needed to be exposed to an audio-recording to prevent decision regret in 1 patient.
  • With respect to the secondary outcomes
    • The usefulness of the audio-recording was 1.8 in terms of patient satisfaction (on a scale from 1 to 5, with 1 being very useful, 5 being not useful).
    • The average (mean) number of times patients listened to the audio-recording was 3.
    • Thematic analysis of free text comments from the patient satisfaction questionnaires showed 77 positive comments about availability of the audio-recording and 5 negative comments.
    • Thematic analysis of free text comments from the patient satisfaction questionnaires by members of the control group included 14 comments, and 4 threads dealt with why the patients in the control group would have found a recording useful.
  • Receiving an audio-recording was a stronger predictor of absence of long-term regret than being continent or potent.

Another point made by Good et al. (and based on earlier research by the same research team; see Hacking et al.) is that providing such audio-recordings is easy and apparently as cost-effective as asking patients to work their way through some type of decision-support tool.

The authors conclude that

The study has shown that audio-recording clinic consultation reduces long-term decision regret, increases patient information recall, understanding and confidence in their decision. There is great potential for further expansion of this low-cost intervention.

A topic that Good et al. do not deal with in this paper is also of great interest to The “New” Prostate Cancer InfoLink, and that is the likelihood that if clinics set out to provide audio-recordings of such consults to their patients, it presumably would have very considerable impact on the quality and accuracy of the information actually provided to the patient and his family. For example, failure to provide a low-risk patient with information about active surveillance would immediately be evident, as would suggestions that any one form of treatment for otherwise low-risk patients would necessarily have better outcomes compared to another (a common suggestion that many patients tell us they hear, but one for which there is no good evidence whatsoever). In other words, if the physician sets out to audio-record patient consults and give the patients the audio-recordings, s/he is much more likely to do a really good job of summarizing important information well for the patient.

Editorial comment: The “New” Prostate Cancer InfoLink thanks Dr. Daniel Good of Edinburgh University, Edinburgh, Scotland, for kindly providing us with full text versions of the two papers referenced above for our review.

9 Responses

  1. I believe a short recorded overview prior to biopsy of the possible grades with a broad overview of the possible treatments would let that first post-biopsy meeting be more productive as well. There is probably an equal amount of information missed when the statement, “I have scheduled a biopsy for you” is made. Surveillance is a more readily acceptable concept before being told one has cancer. Pre-panic.

    I expect some continued frustration even after the recording is from patients whom did not even form their questions until after the diagnosis discussion.

  2. What a great idea. The egos and the attitudes of the urologists I have encountered make me think this will never happen. They actually believe that in one or two visits they provide a new patient with all the information he would need and that the patient fully understands them. Egos will get in the way for this very easy and practical improvement.

  3. I agree with Mike. However, good luck with making this policy. I think there would be resistance from doctors working in many organised medical legal environments, say a country. Would a doctor like having his or her “errors” recorded for possible litigation or complaints to a formal oversight body? One of mine omitted a treatment possibility by neglecting (?) to state a medical fact. This happened in the Netherlands. I left the country for proper, maximally aggressive treatment. I do not know if this urologist’s omission was intentional. One other point is that a system that enjoys the benefits of private insurance for all, might have those bloodsuckers making a rule forbidding any such recording.

  4. From an Americo-centric perspective, I think the interesting question here is whether one of the staff-model managed care organizations like Kaiser Permanente might want to at least pilot a concept like this.

    In theory, if appropriately executed, a process like this might actually protect provider groups and individual physicians from certain types of lawsuit while simultaneously providing patients with an accurate replica of what they were told at the time of their consult.

  5. I agree with Bob too. The Dutch urologist gave me no useful and true information, just drew a silly diagram of a prostate on a piece of paper, told me I was high risk, then made the error I mentioned. When I got my official dossier, which took a bit of quite un-Dutch insistence, it was nearly as flimsy and unreadable. Would this doctor ever consent to the recording idea? I doubt it. Would his hospital? No. His insurer masters? I have good reason to believe they included an American firm — with strong probability AIG — a bit before these incidents. I doubt it; for consenting might have forced them to do this in the USA too. Maybe Kaiser would now, as I have heard only good things about that firm.

  6. Sorry to burst your bubble George. I am a retired Kaiser doc (pediatrics) and I knew the urologists personally but when I started the journey with prostate cancer they were just as cavalier about treatment as any doctors. I even inquired since the program has such great records and ability to track every patient by diagnosis whether there was a center of excellence within the entire program and at that time was told “No and the urologists don’t even meet together”. Very disappointing. KP has a great record at doing longitudinal population-based research but most of them still doubt that prostate cancer warrants a uniform, state of the art approach. Despite that Kaiser spends multiple millions treating men as each urologist sees fit. Not cost effective, nor rational in my view.

    I love my care and the sicker you are, the better your care, so I am not disillusioned as a KP patient, only with the lack of a clear approach to prostate cancer.

  7. The urologist who did my biopsy did not mention active surveillance. When I brought it up, he was totally dismissive. I sought a second opinion and was told active surveillance was a good option for me. Ultimately four out of five doctors said it was an option, the exception being the first urologist.

  8. That is bad to hear Bob. I know several people who praise KP. However, they are women. Also, I doubt they follow developments in prostate cancer care. Or if some do it is a one-off. They just like KP’s service. I just cannot stand cavalier doctors. I leave as soon as I notice that trait. I do know two quite thoughtful and considerate ones, and one who did his best despite certain limitations. Oh well, only our peace of mind and lives are at stake.

  9. Bob Lederer said; “Egos will get in the way for this very easy and practical improvement”.

    Locally I see the sole practitioners being squeezed out and consolidating into hospital-sponsored groups. (Read as a quota-based business.)

    Egos do not make quota, but then really good doctors often do not either. Both take time to see patients.

    If it catches on it will be because it is a faster way to cover the basics.

    The other kind of ego, ” I know so you do not have to”, will not change.

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