My Visionary Idea
In my last blog, I related how it helps to be a bit crazy to come up with a visionary idea. We bipolars tend to be blessed with craziness in abundance.
My visionary idea is a series of recovery guidelines for patients. These will involve interrelated stepped blueprints involving diagnosis, meds treatment, non-meds treatment, lifestyle choices, and other topics. The idea is to help patients form their own recovery plans that they can use in partnership with their clinicians, loved ones and others.
But vision requires a strong logical underpinning. So here is the method to my madness:
The Smoke-Filled Room
The dinner dishes are soaking in the sink, a toasty fire is roaring in the fireplace. Paul, my house mate, is seated in his favorite spot, feet propped on the low table, laptop open, reading his email. The topic is algorithms. Paul is a mental health advocate, who happens to be on a committee looking into their implementation here in California.
Algorithms are basically sequenced flow charts that guide clinicians in treating patients. In a more narrative form they tend to be called treatment guidelines. Basically, guidelines and algorithms recommend certain first options for a particular condition, and, depending how the patient responds, move on to second and third options. The idea is that evidence-based science should take the guesswork out of treatment.
I put another log in the fire. Paul is about to say something. I can feel a conversation coming on. It’s a conversation we’ve had numerous times before.
I first became familiar with algorithms and treatment guidelines about six years ago, and quickly learned to mine them for clinical information. But my initial enthusiasm quickly started to diminish once I figured out that when it came to specifics, they are only good at recommending the obvious.
For instance, mania is fairly straightforward to treat. Just hand me a sledge hammer and I can probably set up my own unauthorized mania clinic with fewer side effects than meds, at least for the short term.
But what about long-term mania treatment? Uh, turns out the guidelines have little to say. Long-term treatment, you see, is far more problematic, and there is little in the way of scientific evidence to guide us.
So what good are treatment guidelines, then? Precisely my point. If you’re looking for definitive answers in these guidelines on treating bipolar depression, mixed depressive states, hypomania, rapid-cycling, and other permutations to our illness, you’re not going to find much. The silent treatment, mostly. A few tentative stabs in the dark, and also some wrong answers, inexcusably wrong ones.
Wrong answers? From various panels of top experts? How can this be?
I’m back in my seat now. The conversation is about to begin.
Paul and I have been brainstorming the topic over the course of several weeks. I have pointed out to him numerous instances of suspect treatment guideline recommendations. The most obvious one is that four North American guidelines recommend Lamictal as a first choice (in one case the only first choice) for acute (initial phase) bipolar depression. All four guidelines cite a single published study as their rationale for the recommendation. What these guidelines neglect to mention is the four unpublished studies (plus three more for unipolar depression) in which Lamictal fared no better than the placebo.
(Lamictal is a mood stabilizer and has proven its effectiveness in preventing bipolar depression. In other words, the best evidence indicates that Lamictal is a “staying well” med rather than a “getting well” med.)
But Paul is challenging me to do better than that. The conversation is animated. We’re both bipolar, after all, and now we’re generating more sparks than the roaring fire at our backs. Yes, he is prepared to concede that there are glaring errors in these guidelines, but he wants me to dig deeper. What kind of fault in the system allowed these errors to happen? he wants to know. Point out the system faults, he is telling me in effect. Let’s see if we can identify them and come up with solutions.
It’s morning. Paul is on the road. Suddenly, as I am working on something else, a vision of the system faults Paul has requested pops into my head. I set my current work aside and start typing out a hurried email. He wants system faults, okay, I’ll give him system faults.
For starters, how about accuracy? At the heart of a number of suspect recommendations was the fact that the experts had failed to account for unpublished studies that contradicted the published ones. So how does one get hold of the unpublished studies? The FDA has them. Just put in a Freedom of Information Act request. There’s more to it than that, but you get the picture.
How about timeliness, for another? (My fingers are flying over the keyboard now.) Guidelines are updated every several years at the earliest. Lots of things happen, in the meantime, such as Seroquel being approved by the FDA late last year to treat bipolar depression. Yet, we’re years away from any guideline taking this new development into account. Solution? Some kind of built-in quick response system.
Finally, there’s credibility. Guidelines that cannot guarantee accuracy or timeliness are simply not credible. Fix the first two system faults and the third corrects itself.
I fire off my email, mission accomplished. Time for some fresh air.
The Story Continues
If you want a job done right, you have to do it yourself. Over the weeks, Paul and I have been working our way to the decision that we need to create our own guidelines, but with a fundamental difference. These will be guidelines for patients, rather than clinicians. How did we come to that conclusion? That’s the topic of another blog…