Treatment decision-making and subsequent outcomes: a survey among African American survivors


The degree to which individual patients with prostate cancer wish to participate in making decisions about their treatment varies considerably, and it is important for health professionals to understand the degree to which each individual patient wants to be an active participant in these decisions.

Palmer et al. have investigated the degree of involvement of nearly 200 African-American prostate cancer survivors (all based on North Carolina) in decisions about their treatment, and the association between this degree of involvement and quality of life post-treatment.

Study participants all completed a survey that asked about their chosen cancer treatment, factors that affected their choice of treatment, and post-treatment quality of life (using the Expanded Prostate Cancer Index Composite or EPIC system).

Here are the core results of their study:

  • 181  African-American survivors were recruited from the North Carolina Central Cancer Registry.
  • The degree of involvement of patients in their treatment decision-making process fell into one of three categories:
    • 80/181 men (44.2 percent) reported being “active” participants.
    • 69/181 men (38.1 percent) reported being “collaborative” participants.
    • 26/181 men (14.4 percent) reported a preference for a passive role.
  • After adjustments for marital status, education and treatment,
    • Passive patients reported slightly better quality of life post-treatment compared to active patients.
    • The quality of life improvements were in three urinary domains (urinary summary, urinary function, and urinary incontinence).

Palmer at el. conclude that:

  • The majority of African-American prostate cancer survivors preferred to be, and were, actively or collaboratively involved in decision-making about their treatment.
  • Survivors who preferred a passive role reported better prostate cancer-specific quality of life for the urinary domain after treatment (compared to others).

The “New” Prostate Cancer InfoLink is of the opinion that there is no “right” or “wrong” approach to treatment decision-making for the individual patient. It is a matter of knowledge, education, and preference. It would seem to be a perfectly reasonable conclusion that men who had a passive attitude to treatment decision-making might well be more satisfied with their quality of life post-treatment since they had basically made an early decision that what needed to get done was the doctor’s decision and the consequent outcome would just “need to be lived with.” By contrast, men who are highly involved in the decision-making process might fret more about the subsequent outcome and have a tendency to second guess their own decisions.

What is crucial to the decision-making process from a patient perspective is comfort with the process and awareness of and acceptance of the potential consequences. The worst situations occur when either (a) a patient who really wants serious involvement in the decision-making process is not able to get access to the information he needs to make a good decision or (b) when a physician does not recognize clear signals that a patient simply wants him or her to make a strong recommendation about appropriate treatment (and its potential consequences) and just ask the patient to accept that recommendation. In either case, the patient is being asked to accept a level of responsibility with which he is not comfortable.

3 Responses

  1. You said, “The degree to which individual patients with prostate cancer wish to participate in making decisions about their treatment varies considerably, and it is important for health professionals to understand the degree to which each individual patient wants to be an active participant in these decisions.” It is my opinion that patient participation is primarily governed by what kind of insurance they have. Most with insurance just do what they are told, since it doesn’t cost them anything to get the full boat of “service.” Those of us without insurance make better decisions. Insurance is the enemy.

    FS

  2. Obviously you’re not talking about who wants a 100% ownership of the prostate cancer treatment-response.

    And, this has caused my being intimidated, blacklisted, ignored, and even injured by two cooperating medical platforms collaborating to put me in my place, yet my results have resulted in a 09-20-2016/PSA level of 0.330 ng/ml and a serum testosterone level of 42 (as of September 20, 2106).

    My next move, hopefully, would see me more dependent on clinical trials than the insurance-covered clinics whose FDA-approved drugs are way more toxic, mutation-orientated, and two to three generations behind the times.

  3. Dear Mr. Davis:

    Without a great deal more detailed context, it is, alas, quite impossible to understand the precise nature of what you are implying.

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