In a separate space1, we have spoken about employing a battery of measures as part of diagnosing ADHD. In this blog, we're discussing how to track ADHD symptoms during treatment, which is a separate issue. In contrast to measures optimized to establish a diagnosis, this is about how to see if medications or other ADHD treatments are working in patients who have already been diagnosed. Today's blog will be of greatest interest and value to ADHD treatment providers, although ADHD patients may find it informative as well.
Ironically, while there is a wealth of quantitative tools to help with ADHD diagnosis, there is a paucity of such tools specifically designed for tracking ADHD symptom progress during treatment. This stands in contrast to other common outpatient psychiatric disorders. For example, depression and anxiety are routinely tracked using simple self-administered rating scales: the PHQ-9 and GAD-7.
Even if you’ve never been to see a mental health professional, you’ve probably encountered these surveys in the office of your primary care doctor or the waiting area of your local emergency room or urgent care. The PHQ-9 and GAD-7 are widely used in these settings because they are free, quick to complete, easily interpreted, and on the whole, pretty useful. How are they useful? These depression and anxiety rating scales were developed to alert your primary care provider that during the few minutes they actually have to meet with you they should devote some time to your mental health - as in: “I see from the questionnaires you filled out in the waiting room that you’ve been feeling stressed lately. Can you tell me a bit more about that: What’s been going on?”
Traditional psychiatric treatment has not relied on symptom rating scales or other quantitative measures, focusing instead on the qualitative judgements of expert providers based on observation and interview. What do rating scales or other quantitative tools (called "Measurement-Based Care") add to this traditional model for evaluating patients and delivering mental health care?
The score on a rating scale filled out by a patient beforehand give their health care provider a little information right at the outset of each visit about how the patient has been doing. Beyond that, individual responses can serve as a tip-off and starting point for further exploration and discussion in the interview. We have personally found that one of the main benefits of routinely using the PHQ-9 and GAD-7 is to provide a cross-check on our patient’s self-perceived treatment progress.
Many times we’ve asked a patient how they’ve been doing since their last visit and they report: “About the same, doc. Nothing’s changed.” And yet, glancing at their PHQ-9 or GAD-7 scores and comparing them to their last visit we see there does appear to have been some change. Almost invariably when we share this with the patient - and especially when we identify an individual item on the rating scale that has shifted - the following exchange ensues:
Doctor: “Hmm. Well I know these surveys are kind of silly (they’re not exactly rocket science after all) but it’s interesting you say nothing’s changed - because at your last visit your PHQ-9 was 12 while today it’s only 7. Looking at individual questions, I see that last time you said you’d been irritable almost every day over the previous 2 weeks, while today you said that’s only happened on a few days.”
Patient: (Mulls this feedback over for a second or two.) “You know doc, now that you mention it, that is true. I have been a bit less irritable. In fact my wife (partner, co-worker, boss, etc) commented on that just yesterday.”
Note that patients in these instances are not intentionally trying to deceive or manipulate their doctors. When we share their previous rating scale responses with them it’s clear they are a little surprised themselves. The fundamental reason why this happens is because it’s difficult for human beings to be objective about themselves. The human brain is optimized for fooling itself.2 The brain doesn’t like to notice that its “self” changes over time - i.e. that its perceptions, thought patterns and behaviors are not the same today as they were a few weeks ago - let alone that a medication might be affecting these aspects of "self."
There’s an even simpler explanation: Our memory for this type of information is just terrible: Speaking only for ourselves, we can’t remember what we ate for breakfast two days ago. If that's true for you too, what hope really is there that any of us can reliably report what our mood, anxiety, or attention were like several weeks ago - let alone compare that to how we are feeling today? So if a patient is taking a medication or another treatment for depression or anxiety, it's helpful to have a simple way to track and record how their symptoms change over time. The PHQ-9 and GAD-7 neatly fill this need: In sum, they are useful as simple, quick, self-administered measures to help mental health providers track how their patient is responding to treatment for depression and anxiety over successive follow-up visits.
It sure would be useful to have a similar simple self-administered rating scale to track how ADHD symptom severity changes during treatment - regardless of the treatment being provided: ADHD coaching, CBT for ADHD, a non-stimulant, or a stimulant medication. Is there a PHQ-9 or GAD-7 equivalent for ADHD?
Remarkably: No, not really. There is one survey (the AAQoL3) specifically validated as an ADHD treatment-response and outcome measure - but (at least in our opinion) it’s a bit long and complicated to ask a patient to fill out at each visit. An oft-employed proxy is another survey called the ASRS - the first 6 items of which can be used alone to keep it short and sweet. But the ASRS was designed and validated as a screening tool for ADHD diagnosis, not as a survey for tracking treatment response. Because it was designed for diagnosis, the ASRS asks patients to report on how they’ve been doing over the past 6 months, an interval derived from DSM diagnostic criteria. Six months makes sense if you’re trying to decide about ADHD as a diagnosis, but it’s hardly appropriate if you’re trying to find out how your (already diagnosed) patient’s been doing since you changed their treatment just 3 weeks ago.
For these reasons, I, Dr. Ben Cheyette developed what I call the HII-5 (Hyperactivity, Impulsivity, Inattention Symptom Rating Scale). It must be noted that a lot of hard work went into developing and validating the PHQ-9 for depression and the GAD-7 for anxiety, and I have not done that kind of legwork for ADHD. With that admitted, it's been correctly stated that necessity is the mother of invention and further, that imitation is the sincerest form of flattery.
I’ve taken the liberty of creating a simple symptom rating scale for ADHD modeled closely on the PHQ-9 and GAD-7. I also designed it to be quick, easy to fill out and score, and no-tech. Finally I designed it for use in rapid screening and treatment tracking, not for ADHD diagnosis. In my adult practice I’ve found it to be useful for tracking patients’ basic ADHD symptom severity and medication compliance as I collaborate with them to optimize treatment over successive follow-up visits.
You are welcome to use the HII-5 for free if you wish. This is the scale.
At my current employ (Mindful Health Solutions), a multi-state multi-site outpatient mental health practice, we are working to validate the HII-5 against other ADHD measures. We are also collecting data about how the HII-5 changes alongside the PHQ-9 and GAD-7 in patients with ADHD plus comorbid depression and anxiety in a naturalistic setting (i.e. our outpatient general mental health practice). While that process is ongoing, I provisionally use the following rubric for rating current ADHD symptom severity (once again in patients already diagnosed, undergoing treatment) based on their total score at each follow-up visit:
3. Matza LS, Johnston JA, Faries DE, Malley KG, Brod M. Responsiveness of the Adult Attention-Deficit/Hyperactivity Disorder Quality of Life Scale (AAQoL). Qual Life Res. 2007 Nov;16(9):1511-20. doi: 10.1007/s11136-007-9254-9. Epub 2007 Sep 12. PMID: 17874207