Symptoms, Signals or Stop Signs
Recently, I was lucky enough to meet with some of the best and brightest researchers in depression treatment. In addition to university-based researchers, there were some pharmaceutical representatives and a key leader from the FDA at the meeting. The conference was titled "Advancing Signal Strength in Proof of Concept Studies in Major Depression" and was sponsored by the University of Arizona's psychiatry department. Its focus was on advancing signal strength.
What does that mean? What's a signal? A signal is a sign that things are working or not working, when developing a new treatment. Most signals are based on the traditional symptoms used to determine if we have a mood disorder (i.e., depression or bipolar disorder).
As usual, I was the only identified consumer present at the meeting. I did, however, bring the input of hundreds of other consumers with me through the use of survey results and comments folks provided me. I try very hard to post surveys on the DBSA website to get input from as many people as possible before I present a patient perspective at any meeting. I would appreciate it if you help me out as well by checking out our website every week or so to give us your feedback on different surveys. You can also have the surveys come to you by signing up for our e-news alert that comes out every two weeks. We always let folks know about the latest survey in the alert.
I was particularly interested the in following results from one of our recent surveys, "Defining Treatment Outcomes":
Question: In your opinion, has your treatment been successful?
Question: What do you expect from treatment?
I may still have symptoms, but they are manageable and I can still do the things that are important to me. 74.5%
My most bothersome symptoms will lessen or go away. 15.3%
All of my symptoms will go away, and I will be able to do all the things that are important to me. 10.2%
What worried me the most about these responses was how many of us don't see ourselves as successfully treated ... and yet, how little we expected from our treatment? We actually don't expect our symptoms to go away; we just want to live fully-in the midst of these symptoms. One respondent said this: "Successful treatment is quality of life including physical wellness, not just the mental aspect."
Focusing on symptoms is a problem for most of us living with these illnesses. I'll never forget, early in my time at DBSA, when I stumbled across a newspaper article about why nine symptoms were selected as keys to identifying depression-instead of 11 or 15 or any other number... and why five of those symptoms must be present for more than two weeks for a diagnosis of depression. The researcher who created this standard said "It sounded like a good number," or something to that effect.
The reality that we are still struggling to understand these illnesses hit me again during the meeting I attended, when one researcher made an excellent point: that two of us could see the same doctor with a completely different set of symptoms... and still be diagnosed with the same illness and given the same treatment. We don't even know which treatments might work best for which set of symptoms. And, as many of you know, the STAR*D trials show that only 60 percent of us get better even after four different treatments have been attempted. Talk about a stop sign.
So if symptoms are a difficult way to define our illnesses, to determine which treatment will be most effective and to determine how effective our treatment is, what might the alternative be?
Dr. Ellen Frank once posted that looking at outcomes based on those things you and I find important might be a much more recovery-based and honest-way of thinking about this. She suggests looking at something like this:
Step One: Define for myself how my illness is affecting my life.
As a result of my depression, I
1. Feel hopeless about ever feeling well again
2. Have had to take a leave of absence from work
3. Fight with my wife and my children all the time ... and feel horrible about it
4. Am unable to participate in any activities outside the home-or am uninterested
Step Two: Create a scale that tracks how my illness gets in the way on each of the areas I have identified.
Current level of faith that I can feel well again
No hope Certain I can get back to my old self
Current work status
Quit/Fired On leave Returned part-time Full-time
Current level of family tension/fights
Constant fighting No fighting
Current frequency of activities outside the house (Card playing, visiting with friends, outings with kids, coaching little league, etc.)
No activities Six or more activities
Step Three: Track this over time and adjust treatment based on improvements in the areas that I actually care about.
On considering once again the survey results, it seems to me that this is a more meaningful way to look at our illness and our wellness-in the light of what matters to us.
And that might actually be a green light instead of a stop sign. What do you think?