There is growing recognition that the patient's satisfaction or regret with his treatment decision is more than just a matter of whether he is happy with the oncological outcome. Satisfaction/regret is the product of many variables, including how well he understood his options, his interactions with his doctors, the side effects he suffered and when he suffered them, his expectations about the side effects of treatment, and cultural factors.
Shaverdian et al. explored the issue of treatment regret with patients treated at UCLA with three kinds of radiation therapy: Intensity Modulated Radiation Therapy (IMRT), Stereotactic Body Radiation Therapy (SBRT), and High Dose Rate Brachytherapy (HDR). Questionnaires were sent to 329 consecutive low or favorable intermediate risk patients treated from 2008 to 2014 with at least one year of post-treatment follow-up. There was a high (86%) response rate. The number of responses were:
- IMRT - 74 patients
- SBRT - 108 patients
- HDR - 94 patients
Patient characteristics were similar across treatments. The only significant differences were:
- HDR patients were a median of 5 years younger
- IMRT patients disproportionately African- American and Asian-American
- Length of follow-up was longer for IMRT patients
- HDR patients were more likely to be taking medication for erectile dysfunction.
Decision-making process
Those that chose IMRT spent less time making their decision. The percent that spent less than a month making their decision was:
- IMRT: 47%
- SBRT: 31%
- HDR: 12%
Although most patients felt they had learned enough about the treatment options before making their decision, those who chose IMRT were least likely to say so:
- IMRT: 83%
- SBRT: 91%
- HDR: 86%
- 11% of the IMRT patients wished they had learned more about active surveillance.
There was widespread agreement that they had worked mutually with their doctors to arrive at a decision.
- IMRT: 85%
- SBRT: 91%
- HDR: 84%
Treatment regret
The percent who felt that they would have been better off with a different choice was least for SBRT:
- IMRT: 19%
- SBRT: 5%
- HDR: 18%
- This rate of treatment regret for IMRT and HDR is similar to the rate expressed for surgery (see this link).
Of those who expressed treatment regret, the biggest reason for it (36%) was because they could have had better sexual function. 72% of those with treatment regret would have chosen active surveillance if they had it to do over again.
After correcting for patient characteristics, the factor most associated with treatment regret was whether they had learned enough about other treatments. Those with treatment regret were 53 times as likely (odds ratio) to say that they had not learned enough. The next biggest factor predicting treatment regret was whether the long-term side effects were worse than expected (odds ratio = 42). Expectations and the disappointment of those expectations have a large impact on treatment regret. Those who chose IMRT were 11 times more likely to have treatment regret than those who chose SBRT, and those choosing HDR were 7 times more likely to experience treatment regret compared to SBRT. The table below shows the odds ratio for all statistically significant factors.
|
Relative impact on treatment regret
(odds
ratio)
|
Decision-Making Factors
|
|
Learned enough about treatments
|
53
|
Mutually worked with physicians
|
16
|
Doctors fully informed me
|
11
|
|
|
Side Effects
|
|
Short-term side effects worse than expected
|
8
|
Long-term side effects worse than expected
|
42
|
Bowel function
|
8
|
Sexual function
|
5
|
Urinary function
|
5
|
|
|
Treatment
|
|
IMRT vs SBRT
|
11
|
HDR vs SBRT
|
7
|
HDR vs IMRT
|
1
|
While IMRT was the highest cost treatment, it also gave the lowest value to the patient. Conversely, SBRT, the lowest cost treatment, provided patients with the highest value. To increase value to patients, doctors must assure that patients are fully informed about all their treatment options, and the side effects that they may reasonably expect. Patients should be encouraged to take their time investigating options, especially active surveillance.
All patients in this study were treated at UCLA, which has a policy of fully informing patients of all their options and expected outcomes. It is impossible to entirely separate the effect of superior patient counseling on the part of the physician from the superior treatment outcomes as the reasons for increased patient satisfaction. Perhaps if this questionnaire were used across multiple institutions those effects could be distinguished. Because UCLA is a nationally-renowned tertiary care center, these results are not at all applicable to what goes on in the community setting. If expanded, we would like to see comparisons with other treatment modalities: surgery (robotic and open), low dose rate brachytherapy, active surveillance, proton beam therapy, hypofractionated IMRT, and focal ablation therapies. It would also be instructive to compare the value attached to adjuvant treatment modalities (e.g., brachy boost therapy and hormone therapy) given to patients with more advanced disease and in the salvage setting. It is a good start, however, and provides a validated questionnaire by which treatment centers can assess their performance and set goals for improvement. We would love to see this "report card" expanded nationally.
Questionnaire
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
note: Thanks to Dr. King for allowing me to review the full text.