The notion that paper forms can be used to diagnose or measure mental health might seem crude or simplistic. I’ve heard the complaint more than once: “I just filled out some forms, and they told me I had ADHD”. Wouldn’t you rather lie on a couch and have a quirky but wise, old psychiatrist listen to you for an hour, stroke his beard and announce his diagnosis? Or a highly technical, ultra-costly brain scan?
Think about it, though. What is the quirky psychiatrist doing the whole time you are free associating and airing your darkest impulses? Filling out his own paper forms. And once you leave the space age brain scan center, what does the radiologist send your physician to summarize your case? A paper form.
Forms can never tell the whole story, but they can summarize a lot of it very efficiently.
In my practice, we ask patients and parents to rate ADHD symptoms before we first see them and at every subsequent visit. We also talk about what is going on and what it’s like to have ADHD. The database of forms that we construct over the years gives continuity to the treatment. The conversations give it life. Both are essential.
Tracking the progress of treatment by asking the same questions time after time and scoring the results can be downright tedious, but the discipline is essential to getting the most out of treatment. Scoring the forms gives us a number called the ‘symptom score’. Higher numbers indicate more and worse ADHD symptoms. People without ADHD tend to have low symptom scores. Here are just a few examples of how helpful forms can be…
Symptom scores drift up as a child grows out of a dose of her medication, and we can often see the ‘drift’ before parents and teachers notice the change. The dose can be adjusted before her grades and self-confidence have fallen.
Previously low symptom scores shoot up when someone stops taking medication, of course, but a similar rise can alert us to other problems. Stimulants can sometimes contribute to the development of anxiety conditions, even after months or years of successful therapy, causing symptoms to rise. Depression and substance use can suddenly worsen symptoms as well.
Symptom scores can decrease (improve) slowly for several months, even a year or two with non-stimulant therapies such as Strattera or Tenex. Trials of 6-8 weeks that don’t show promise are often stopped, but patients that are limited to non-stimulants for various reasons, often trial them for 6 to 12 months with higher success rates than shorter trials.
Medicines that take 6-12 months to kick in can’t really be said to “kick in”. Responses that slow have to be measured–they can’t be felt. One patient asked to terminate a trial of Strattera after 9 months, saying “I don’t feel like it’s making any difference.”
I showed him his original symptom score rankings next to the ones he had just completed. His symptom score had dropped 75% over 9 months, slowly and steadily. He stared at the notes he had made for over two minutes. Finally he looked back at me and said, “I forgot how bad my life used to be.”
The measurements were his own distillation of his own life. Not my notes, but his. Those were more than just paper forms. They were a sketchy outline of a complex life, but they stored meaning that now guided us.
Estimating and recording behavior patterns and the narratives that change with them isn’t precise, per se, but it is powerful. As of 2014, it’s the best way we know to manage the care of someone with ADHD.
So tell me, what was your ADHD (or your child’s) like two years ago this month? What have you done in those two years to change that? And just how well has it worked? Got forms?
oren – I don’t like forms, but I would use them while making a ADD ADHD diagnosis and also used a questionnaire for patients before I saw them the first time.
But your points make good sense. I really like the story of the guy who said his medicine wasn’t working.
This is exactly what is needed and I have spent 3 years without progress due to lack of a system like this.
Of course if you are taking medications or “chemicals” as the dr said it would only make sense to have some evidence of which way you are headed better or worse.
Can I make an appt?
Thank you for your work in sharing your experience and process with others..
I was grateful to hear you speak at the chadd conference in SF.
I could benefit from the questionnaire!!
Orem, Like you way form don’t tell the whole story. I like the qualitative measures you use during treatment as a performance measurement. For ADHD diagnosis self-reporting “forms” of ADHD are great tools but but to use them solely for diagnosis is unreliable which it the example you start out your post with. I am sure a battery of forms could reach a diagnosis but so much more can be discovered with testing and analysis of the results of standardized tests. Even the heat map graphs of brain scans only show oxygenation of blood, it is the interpretation and analysis that actually counts.
You make a good point in your post for self-report of symptoms, the patient’s perception may be skewed. It was a eye-opening moment when my wife’s report of my ADHD symptoms were a lot more severe than I had ever realized…Okay, it had been 5 years since I started painting the house, I still had the paint. What’s the big deal? The cans are right next to the unfinished bookshelves in the garage that we’ve never park a car in…Where the garage door opener was didn’t matter, the lock on the door was broken. I had the replacement lock on the bookshelves.