I've touched on this topic before.
Here, in Jan of this year: Patients vs Docs - Treatment goals for cancer patients, in which researchers stated: In our sample of 81 patients and 91 physicians, 63% of patients preferred the therapy with durable survival compared to 30% of physicians. The average patient preferred the therapy with durable survival even if the nonvarying treatment had 13.6 months longer average survival. The presence of more severe AEs did not change these preferences. In contrast, the average oncologist preferred treatments with fixed survival unless the survival had 7.5 months shorter average survival compared to the treatment with durable survival gains. These findings suggest patients value therapies that provide a chance at durable survival, and this result holds even when compared to therapies with more severe AEs.
Where I concluded: Doctors should evaluate patients, explain their condition, work to find all available treatment options and present them, but PATIENTS should have the ultimate choice in the treatment they find right for them. Because it doesn't seem that docs and patients agree - and docs aren't the ones who could lose.
And here in April: Perception....patient vs doctors in cancer care Here, researchers noted: "Patients place a high value on therapies that provide a chance of durable or "tail-of-the-curve" survival, whereas physicians do not. " While my conclusion read in part: A patient's perspective should be INCLUDED (at the very least) in their own health care decisions AND in research/trial development and implementation!!!
Now there's this:
Patient and oncologist preferences for attributes of treatments in advanced melanoma: a discrete choice experiment. Liu, Witt, Ebinghaus, et al. Patient Prefer Adherence. 2017 Aug 14.
To examine and compare patient and oncologist preferences for advanced melanoma treatment attributes and to document their trade-offs for benefits with risks.
A
discrete choice experiment (DCE) was conducted among advanced
melanoma patients and oncologists. Qualitative pilot testing was used
to inform the DCE design. A series of scenarios asked stakeholders to
choose between two hypothetical medications, each with seven
attributes: mode of administration (MoA), dosing schedule (DS),
median duration of therapy (MDT), objective response rate (ORR),
progression-free survival (PFS), overall survival (OS), and grade 3-4
adverse events (AEs). Hierarchical Bayesian logistic regression
models were used to determine patients' and oncologists' choice-based
preferences, analysis of variance models were used to estimate the
relative importance of attributes, and independent t-tests
were used to compare relative importance estimates between
stakeholders.
In
total, 200 patients and 226 oncologists completed the study. OS was
most important to patients (33%), followed by AEs (29%) and ORR
(25%). For oncologists, AEs were most important (49%), followed by OS
(34%) and ORR (12%). An improvement from 55% to 75% in 1-year OS was
valued similar in magnitude to a 23% decrease (from 55% to 32%) in
likelihood of AEs for oncologists.
Patients
valued OS, AEs, and ORR sequentially as the most important attributes
in making a treatment decision, whereas oncologists valued AEs most,
followed by OS and ORR. In comparison, patients differed
significantly from oncologists on the importance of ORR, AEs, and
PFS, but were consistent in OS and the rest of attributes.
So - when choosing treatment options, the issues in order of importance to patients were: Overall survival results, risk of side effects, overall response rates. While oncologists considered side effects, then OS, then ORR to be the greatest priority. Now....I could be decidedly uncharitable and assume that side effects are important to docs because if they treat patients with therapies that have fewer side effects, then they have less work to do and fewer problems to deal with!!! But, I am not going to assume that. What I AM going to say to oncs is this: All treatments suck. Melanoma can kill me if I don't get the best treatment I can. I want to live. And, I should get to choose the treatment that suits MY level of tolerance for risk....NOT YOURS!!!!
Patient advocacy. THAT is my job. - c
Well said, my son believes the longer he lives the better his chances are to get the next new drug and maybe a cure!
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