Shared decision-making is developing as the proposed solution to many of the problems with resource utilization today. Rather than embrace “zero miss” practice without properly involving patients as the decision-makers, we are now encouraged to offer the patient choices regarding their diagnostic and treatment decisions. By sharing the decision – and the risk – I find patients quite amenable to forgoing much low-yield testing.
To that end, a multi-center trial has begun, evaluating the use of shared decision-making in low-risk chest pain. The trial is based on an information graphic created by the Mayo Clinic, and individualized risk assessment is supported by Jeff Kline’s attribute-matching algorithms. This is fabulous, from a conceptual standpoint – as shared decision-making is not nearly as feasible without the proper communication tools or best available evidence available at the point of care.
However, there’s an important missing element from the proposed information graphic:
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| Link to high-resolution version. |
The decision tool explains the 45-day risk of myocardial infarction if testing is deferred. However, the patient-oriented decision is between stress test (or CT coronary angiogram, at the University of Pennsylvania), cardiology follow-up, and primary care follow-up – and the decision aid doesn’t actually address those choices. It does not describe the relative risks of MI between each option, and, more importantly, it does not describe the risks or benefits of the additional testing offered. Without information regarding the rates of true positive and false positive test results, the incremental prognostic value of such tests, or the costs associated with additional testing, the patient doesn’t have the appropriate foundational information for their choice.
Conceptually, this is a fantastic trial. However, I’m not sure the decision-aid has been correctly designed and implemented, with regard to the choices offered. Indeed, if the poor test characteristics of stress and CTCA in this population were shared with patients, it would probably even show more powerful reductions in resource utilization.
“Effectiveness of the Chest Pain Choice decision aid in emergency department patients with low-risk chest pain: study protocol for a multicenter randomized trial”
http://www.trialsjournal.com/content/15/1/166
Thank you for these insightful comments. This is Dr. Erik Hess, the PI on this multicenter trial. What is not necessarily intuitive and may not be immediately apparent to the reader is the how the process of decision aid development determines the content selected for inclusion. The main factor that determines what information is included in the decision aid is how the information facilitates a conversation between the clinician and the patient and what information the end-users find relevant to the decision at hand (not what insights seem to make good theoretical sense outside the context of the clinical encounter). In the process of decision aid development we used prototypes of the tool in real ED encounters and, with each use, elicited feedback from both the clinician and the patient regarding the clarity, usefulness, and relevance of the information to the discussion and whether the decision aid was a distractor (brought undue focus on itself) or facilitated a conversation. In one of the earlier iterations of the tool (there were over 15 iterations) the patient and stakeholder advisory group did make a similar comment — that more information comparing the test characteristics, degree of radiation exposure, and cost of each of the diagnostic modalities and the risks and benefits of the follow-up options might be helpful. However, when we included this information on the DA and tested it in clinical encounters we were told by the end-users that the information was not needed for decision making, brought undue focus on the decision aid itself rather than promoting a conversation, and was confusing (information overload when used in real time). Note that as a compromise a reference to the different stress testing modalities and some of their key differences are referred to as a footnote on the bottom left of the decision aid but we reduced the amount of information, chose a smaller font, and put the information in a footnote so as to not distract from the conversation. In addition, though the test characteristics between CTA and the various stress testing modalities differ, there is no difference in the relative risk of MI between each of these modalities, as they are diagnostic modalities, not treatments. At best, they further refine prognosis but do not change it.
Hi Erik –
Thanks for stopping by and leaving your comments. It's a pleasure and honor to gain greater insight into the decision instrument development process.
I'm surprised to hear patients and clinicians don't find value in understanding the pros and cons of the various options presented. When I have shared decision-making conversations with patients, I can't imagine being able to reasonably offer them a choice including stress testing or CTCA without providing them some context and expectation for the result, considering false positives far outweigh true positives in many of the "low risk" patients probably targeted by this study. You mention end-users were not interested in the information – does this mean patients, or clinicians, or both?
Lastly, you mention there are no differences in prognosis between the various choices presented, as they choices themselves are not therapeutic. While this is technically true, it should also be part of the conversation that some choices may be more likely – despite great cost and false positives – to improve their survival, given identification of a culprit lesion. Otherwise, what possible justification would they have for their varying options?
Thank you again for visiting and commenting. I'll be promoting your comments through social media in an effort to expose folks who may have missed your feedback the first time around.
I find that even educated patients dont easily understand false positives, incidentalomas, and the risks (new risks) that follow.
Some of us also don't , sadly.
The "law of unintended consequences" has too many opportunities to get implemented by tricky mother nature.
And many of us, likely all of us to some point, are influenced by intervention bias.
In addition, while this paper represents highly valuable work and attempt at involving the patient , I don't believe every aspect that could influence the decision is correctly addressed or can be computed by the patient in a stessful situation.
Dr Hess does not address the points made by Ryan.
The fact that primary experience with the first versions indicated patients and physicians didn't find additional details useful does not change the fact that if these points aren't addressed, then, there isn't any really informed shared decision making.
Shared decision making is a nice concept, or rather a Graal. Do we have all the data and accurate figures and percentages for every single patient encounter? Are these figures the right ones for this or that specific patient ? That will be rare. Actually, I'm in awe of the colleagues who can reach a real , fair shared decision.
I find myself unable to have accurate figures for most situations we have to handle.
Even such a simple situation of doing a spinal tap or not gets complicated when we have to give figures for the risk that there is or not a bleed, a meningitis, if there is a meningitis what are the odds it be bacterial (our gestalt ? ), "Can I be paralysed , doc ? " yes you can , very exceptional, never seen a case" Who knows all these figures ?
Share decision is so difficult to fairy and accurately practice it makes me feel dizzy. (What do I mean , dizzy ?).
What is fatally flawed is the terrible communication that patients currently receive with usual care.
Jeff Kline
Well yes.
It's true that this is a huge progress compared to telling the patient he might fal dead if she he doesn't comply with a bunch of costly time consuming false positive/negative producing testing "or else you might fall dead back home".
I was in a dream in a(n almost) perfect world … with plenty of time to discuss with patients.
So my sentence "I don't believe every aspect that could influence the decision is correctly addressed or can be computed by the patient in a stessful situation. " should be softened a lot. That was harsh an a little bit unrealistic.
This is , if the patient understands it all, a great progress as you say as compared to paternalistic or defensive medicine.
Aiming at perfection is unrealistic. Not perfectly informed but better informed is a progress.
Agree completely.
Healthcare has devolved towards what is most expedient for the clinician – considering other financial and professional pressures to "go faster". No value assigned to the time spent helping patients develop competency in their own health.