Radiation treatment satisfaction/regret

Tall,

The correlation between being more fully informed and less treatment regret makes total sense, and projecting that the self selecting group of people on this site, who have chosen to become more informed than the average guys who may be just following whatever their urologist recommends, are more likely to be satisfied with their treatment. My 2 cents.

I wonder if the study participants (as well as our population here at HW) might have induced an educational bias. In my case, I remember that as I began my research, learning about SBRT was something I had to initiate myself, once I had read about it here. My uro, as open minded as he is, didn't have much information about SBRT. He had full descriptive information about the IMRT offered by their captive radiation center, as well as all the information about surgery. He had little information about either form of brachytherapy, as well. So, had I not been aware of SBRT, and interested in it, I would have been shepherded down one of the available "chutes" into either surgery or IMRT. Had I been treated so, once I would have eventually learned about other treatments, I might have had severe treatment regret.

I can't speak for the men who could have considered AS, as I made my choice early on to seek active treatment. I was not interested in keeping my G3+4=7 as a pet.

I know it is early in my journey, but so far I have no treatment regrets.

I agree. That's why I was careful to note that this was at UCLA, where informing patients of all options is a policy, and where SBRT and HDR are offered. They do not offer protons or seeds, however. This is why I'd love to see their questionnaire given as part of standard f/u (along with the EPIC questionnaire) to all patients. It could become a "report card" on how well each doctor is doing in informing his patients and encourage them to do better. A clinician who scores well would get bragging rights.

I don't think it would be very hard for ASTRO and the AUA to create impartial patient decision aids describing each therapy with data on oncological outcomes by risk category and patient-reported outcomes using a standard survey instrument (EPIC) and (eventually) treatment satisfaction/regret results across the entire US population of treated patients.

LOL- Mel, get your mind out of the gutter! F/U = follow up.

Tall Allen said...
I don't think it would be very hard for ASTRO and the AUA to create impartial patient decision aids describing each therapy with data on oncological outcomes by risk category and patient-reported outcomes using a standard survey instrument (EPIC) and (eventually) treatment satisfaction/regret results across the entire US population of treated patients.

Wouldn't THAT be a great aid to newly diagnosed patients! I searched all over to try to find such a decision aid, but the only reference I ever found was a model that was sold to medical practices (probably not cheap) and was no longer available.

For those who have been treated and would like to see how your treatment falls on the treatment regret questionnaire, I've copied it below. It may also be useful for those who have not yet been treated to help assure you minimize your treatment regret.

Prostate Cancer Patient Voice Questionnaire

This questionnaire is designed to better evaluate your treatment experience so that we can continue to improve the quality of the care we provide. To help us get the most accurate measurement, it is important that you answer all questions honestly and completely.

Name: _______________________________________

Today’s Date (please enter date when survey completed): Month ________ Day_______ Year________

Question 1:
What is the highest level of education you have received?
a) Less than high school
b) Graduated from high school
c) Some college
d) Graduated from college
e) Postgraduate degree

Question 2:
How much time did you think about your diagnosis and treatment options before deciding on your treatment?
a) Less than 1 month
b) 1-2 months
c) 2-4 months
d) 4-6 months
e) Over 6 months

Question 3:
Do you believe you learned enough about the different treatment approaches for treating prostate cancer before undergoing treatment? (circle all that apply)
a) Yes
b) No, I wish I had learned more about intensity
modulated radiation therapy (IMRT)
c) No, I wish I had learned more about stereotactic body
radiation therapy (SBRT)
d) No, I wish I had learned more about brachytherapy
e) No, I wish I had learned more about active surveillance
f) No, I wish I had learned more about surgical treatments
g) Other (please specify): _______________________ ___________________________________________

Question 4:
How true or false has the following statement been for you? “I felt that I worked with my doctors to mutually decide on the best treatment plan for me.”
a) Definitely false
b) Mostly false
c) Neither true nor false
d) Mostly true
e) Definitely true

Question 5:
During the past 4 weeks, how much of the time have you wished you could change your mind about the kind of treatment you chose for your prostate cancer?
a) None of the time
b) A little of the time
c) Some of the time
d) A good bit of time
e) Most of the time
f) All of the time

Question 6:
How true or false has the following statement been for you during the past 4 weeks?
“I feel that I would be better off if I had chosen another treatment for my prostate cancer.”
a) Definitely false
b) Mostly false
c) Neither true nor false
d) Mostly true
e) Definitely true

Question 7:
If you do have regret about your treatment, which one of the following most accurately describes the reason why you have regret?
a) I could have had fewer urinary symptoms with another treatment.
b) I could have had fewer rectal symptoms with another treatment.
c) I could have had better sexual function with another treatment.
d) I could have had a less costly treatment.
e) I could have had another more effective treatment.
f) I could be better off now without having had any active treatment.
g) Other (please specify): __________________________________________________________________

Question 8:
If you do have regret about your treatment, which one of the following most accurately describes the treatment you now wished you had received?
a) I would rather have had surgery (robotic or open prostatectomy).
b) I would rather have had stereotactic body radiation therapy (SBRT).
c) I would rather have had Brachytherapy.
d) I would rather have had Intensity Modulated Radiation Therapy (IMRT).
e) I would rather have gone forward without active treatment (Active Surveillance).
f) Other (please specify):__________________________________________________________________

Question 9:
This question asks about the short-term side effects. While undergoing treatment, were the short-term side effects you actually experienced less than or more than you had originally expected?
a) The side effects I actually experienced were exactly as I had expected.
b) The side effects I actually experienced were significantly less than I had expected.
c) The side effects I actually experienced were slightly less than I had expected.
d) The side effects I actually experienced were slightly more than I had expected.
e) The side effects I actually experienced were significantly more than I had expected.

Question 10:
This question asks about the long-term side effects. After completing treatment, were the long-term side effects you actually experienced less than or more than you had originally expected?
a) The side effects I actually experienced were exactly as I had expected.
b) The side effects I actually experienced were significantly less than I had expected.
c) The side effects I actually experienced were slightly less than I had expected.
d) The side effects I actually experienced were slightly more than I had expected.
e) The side effects I actually experienced were significantly more than I had expected.

Question 11:
How strongly do you agree or disagree with the following statement?
“Based on my experience, I believe my doctors fully informed me about possible side effects before I started treatment.”
a) Strongly disagree
b) Disagree
c) Neither agree nor disagree
d) Agree
e) Strongly agree

Question 12:
Overall, how big a problem have your urinary, bowel, and sexual functions been for you during the last 4 weeks? (circle one number on each line)

(0) No problem (1)Very small problem (2)Small problem (3)Moderate problem (4)Very big problem
Urinary function 0 1 2 3 4
Bowel function 0 1 2 3 4
Sexual function 0 1 2 3 4

Paxton, I go for the fiducials at 8am on 2/9/2017 so send some jokes LOL I do have a hell of a sense of humor... I'm sure I'm going to need it through this entire process

Jay

JNF said...
... In my first visit he reviewed my health information including PSA and gave me a urologic exam with DRE and checking my groin area and testicles. He immediately stated that he could feel a nodule on the prostate and with that information and high PSA he scheduled a biopsy. He then spent a good 15 minutes explaining the procedure and introduced me to the PA that does all the biopsies. I was scheduled the same week.

Two days after the biopsy he called and confirmed the positive result. He scheduled a meeting about three days later at the end of the day. He said it would take a couple of hours and he would have some dinner for us. In the meeting he first provided me all the written biopsy info and went over it in great detail discussing each core with it's location, G, PNI, amount of involvement etc. He then went through nomograms to show probability of being outside the capsule. He then took me through the particulars of every treatment known with documents about each procedure, the efficacy in high risk, and the side effects. HIFU, Cryo, surgery, seeds, HDR, external beam, Proton, ADT, etc. He even explained Provenge as it was just coming on the treatment horizon.
...

Wow, wow, wow. I'm not sure I knew that background. That is impressive. Dinner? Sheesh.

No doctor I've ever had was that thorough. My RO was the best, spending probably an hour and a half with me patiently going through all the details. Every other doctor I ever deal with seems like they have their hand on the doorknob as soon as we begin talking.

My uro onc at our "diagnosis review", I suppose it would be called, spent 15-20 minutes with us in the office with a fairly high-level view of the situation. I like detail, and not a lot was deemed pertinent to treatment decisions. It was going to be a vicious surgery, or maybe radiation with HT. That's it. After that meeting was the only time I've seen my wife truly upset (significant water-works), since there just wasn't much good news. There was no candy-coating of anything, just brief and direct.

I don't realistically expect anything more of doctors. A mechanic doesn't need to know how the car feels about a transmission repair. That's all we are to a doctor, generally, a defective meat machine that needs some kind of repair procedure. Go through the flow chart (eg NCCN), select treatment, apply, collect payment. They're under enormous time pressure, and you have to see a lot of patients to pay for insurance (oh, and BMWs, 10000 sq ft homes, boats, and so on).

Having said that though, my RO did seem to take a genuine interest and had very good follow up. Maybe that's why I don't regret my radiation treatment decisions; we had quite in-depth discussion about the whats and hows.