Patients vs docs.....again!

I've addressed data on this topic three times.  Most recently here, with a link to a previous post within:  From September 2017: Patients vs Docs: Choices in melanoma treatment
Here's a summary:
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!!!  

And this from September:  "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."  While I noted:  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!!!!

This is a bit older, but still....

Patient and provider relations and perceptions regarding melanoma treatment decisions.D. Stenehjem, T. Au, S. Ngorsuraches, et al. Society for Melanoma Research 2016 Congress.  Published 29 January 2017. 

New melanoma treatments (tx) are extending survival. To evaluate the patient (pt)-provider (pvdr) relationship and stakeholders’ preferences about melanoma, a survey was distributed to adult pts with melanoma, physicians, pharmacists, and nurses at the Huntsman Cancer Institute. The response rate was 41.9% (N = 220) for pts (Stage 1 or 2, 79.1%; Stage 3, 16.4%; Stage 4, 4.5%) and 37.7% (N = 20) for pvdrs. Descriptive and comparative statistics were used. Regarding pts’ expectations from tx, more pvdrs than pts chose ‘Feeling less pain’ (65% versus 28.6%). Most pvdrs perceived pts were ‘very anxious’ about their melanoma, whereas most pts reported feeling ‘not anxious’. Almost half of pts ‘strongly agree’ they have enough time to discuss melanoma tx with their pvdr, while one pvdr felt similarly. Approximately 70% of pts ‘always’ trust their pvdr to make the best tx decision compared to 15% of pvdrs. Regarding how often pvdrs share their opinions about melanoma, most pts and pvdrs selected ‘always’ and ‘rarely’, respectively. Conversely, most pts reported ‘always’ sharing their concerns and most pvdrs felt this was ‘sometimes’ true. Most pvdrs would recommend melanoma tx that would be effective for greater than / = to 6 to 11 months, while most pts would undergo treatment effective for greater than / = to 24 months. Almost 30% of pts would receive tx that may cause job loss, yet 90% of pvdrs indicated ambivalence  In conclusion, there was discordance in the pt-pvdr relationship and perceptions about quality of life expectations, degree of anxiety, sharing of opinions, and tx-related progression free survival. Elucidating pt-pvdr preferences may enrich shared decision-making especially as more efficacious txs become available. Thus, further studies to examine stakeholder differences are needed to help align across patient-provider expectations.

So yeah....we can handle pain and job loss if we must, you doctor people.  We want to LIVE!!!  We are fully aware that our lives on the line.  You be should too.  We can't afford bullshit.  You need to believe that and tell it straight, too!  Seriously!  If YOU were selecting YOUR treatment options,  would you pick the one that might give you 6-11 months or the one that could be effective for 24????  C'mon man!  THINK!  Put yourself in your patient's shoes!  LISTEN!!!!  Cause here's the thing...one day....you may be taking a walk in those moccasins!!!  

I still contend (and this last report seems to bear out) that asking your provider, "What would you do...if it was your....[self, mom, dad, daughter, etc]...in need of melanoma treatment as I am?"  Force your provider to make it personal.  Cause for us ~ it is. - c