Earlier this year, in late May and early June, Prostate Cancer International (PCaI) conducted what we have described as a very primitive pilot survey on prostate cancer patients’ perceptions of “value” in the management of this disease.
To all of the 642 patients, 62 spouses/partners, and 5 other immediate caregivers (e.g., sons and daughters) who took the time to participate in this survey, and of course anyone else who is interested, please click here to see the results of this survey. And thank you all for your participation (again). We have offered some preliminary thoughts about the implications of these data in a final slide.
We do not pretend that this survey was sophisticated. It wasn’t. As those who participated will remember, Question 5 had been inappropriately formatted on Survey Monkey and could therefore not be properly answered (or deliver useful data).
A couple of brief comments:
- Interpretation of the “free form” responses to Questions 10 and 11 was obviously difficult, and we see these data primarily as a resource that could be used to do a better survey or surveys on this topic in the future.
- There are two slides giving responses to Question 12 that are divided between the patients who self-categorized as high risk or metastatic at the time of diagnosis and those who did not.
- The final slide with the preliminary conclusions is written for presentation to an audience of physicians (see below), and so “you” in that slide refers to “you the doctors”.
We believe that these data need to be interpreted with caution. It is very clear that the quality of communication between every prostate cancer patient, his family members, and his doctor(s) is a critical factor in the patient’s (and the family members’) assessment of “value” provided by that doctor and his or her staff for that particular patient … but …
Quality of communication is a two-way street and so problems can arise on either side of that particular issue. As a professional communicator who is well aware that he holds strong opinions and can be “difficult” to deal with, your sitemaster is also well aware that breakdowns in the quality of communication between a patient and a doctor may not always be the doctor’s fault.
Tomorrow morning (i.e., on Sunday, September 25), the sitemaster will be presenting some (but not all) of the results of this survey as part of an invited lecture at the Presidential Symposium on “Prostate Cancer: Defining Value and Delivering It” at the annual meeting of the American Society of Radiation Oncology (ASTRO) in Boston, Massachusetts. The sitemaster feels very honored to have been given this opportunity. It is rare for a layperson to be invited to address a medical audience of this type on a medical topic. Your sitemaster hopes he won’t make a complete fool of himself! The actual title of the presentation will be, “Are we measuring ‘values’ and ‘outcomes’ that matter most to patients?”
We are also working on writing up the results of the survey (along with some of associated thoughts that will be presented in Boston) as an article that will be submitted for publication to a relatively widely-read medical journal in the near future. We obviously have no control over whether such a paper will be accepted for publication by that journal since it will have to go through peer review. However, we will let you all know if it is in due course.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Treatment | Tagged: Diagnosis, Management, patient, results, survey, Treatment, value |
THE "NEW" PROSTATE CANCER INFOLINK 
It is a well-deserved honor, and I’m sure your presentation will be articulate and edifying, as you always are. I notice that you are in good company for the presentations.
Speaking of outcomes that matter most to patients, I wish there were better understanding of the social outcomes. I’ve seen marriages fall apart (and some couples grow closer). I’ve seen single men become isolated because of shame about urinary and loss of libido and sexual difficulties. There are some very important outcomes that aren’t measured by EPIC or other validated questionnaires — perception of penile shrinkage, climacturia, loss of ejaculate, Peyronie’s, orgasmic effects, and stress incontinence.
Wonderful first effort. No one ever seems to care about “How the patient feels/felt after the treatment.” No one studies “What could we have done better for the patient”. Outcomes are measured and rarely feelings.
Allen Edel hit on even more important issues for men — loss of sexual function in all its forms.
Hope both of you will continue this probe. Many of us are willing to talk openly about our deepest concerns and our reality.
Question I always have is whether the urology community cares about how we patients are impacted. They only want to study surgical or other physical outcomes.
Mike
I am confident you presentation went well.
You know how helpful I find this site and your insightful perspective.
Bill Manning
“May not always be the doctor’s fault”
I wonder whose communication is at fault when a doctor takes blood samples that, as far as the patient is aware, are to be used for cholesterol testing, are then also used for PSA screening without informing the patient (“ambush screening”)?
Your blame shifting is quite obvious Mr. site master.
Dear David:
I am sure that we can both think of hundreds of examples where blame can clearly be laid at the door of a physician. The one you describe is clearly one such occurrence. However, that doesn’t mean that things that go wrong are always a physician’s fault. Every year there are many patients who simply don’t follow the simplest of instructions about all sorts of things.
I am not “blame shifting” at all. Patient communication skills can often be just as much of a problem as those of the physician.