Is your treatment optimal?
The point of being assessed, and if necessary, treated for ADHD is to improve people’s quality of life. That is how we view things at ADHD 360.
Medically, strictly by the book, it could be defined as reducing symptoms in the three main areas of ADHD categorisation, namely inattentiveness, impulsivity and hyperactivity. But does the ‘book’ reflect real life? We don’t think so, and contentious as that statement is, there is a stark fact: none of the patients or families / carers I speak to ever say ‘I want treatment because I have impulsivity and inattention’. None.
What they do say is ‘I am about to lose my marriage due to my behaviours’, ‘my job is at risk due to my mistakes and my performance’ or for children ‘she is just not achieving her potential at school because she can’t concentrate and this makes her feel low’.
Our approach to ‘subjectively’ measuring treatment
At ADHD 360 we ask all of our patients to set three goals, and to view these as tasks on rungs of a ladder that grow in importance the higher up the ladder they get.
Peter Jensen discussed and handed me this model many years ago and it has been used, with his permission, with great effect by us since then. These goals form the basis for our quality of life improvement. It is quite simple really, “let’s get you where you need to get to, or as close as possible, by working together”.
The very first time I used the ‘ladder’ to ascertain treatment goals was when I was coaching an 11-year-old girl’s step Dad about what treatment for her could (should maybe) look like. This event precedes ADHD 360 but the story's emphasis forms the backbone of our approach. As you can see in this image of that day, step Dad wasn’t interested in hyperactivity or inattention; his 11 year old daughter was sexually active because she had a very low self esteem and was very oppositional to the common rules of society.
And once her clinician understood the goals they had, the concerns they genuinely felt and saw them as the focus of the treatment, he switched her medicine, titrated her dose until she was feeling better about herself (as she was achieving things), she was able to go shopping at the Trafford Centre with her parents and her sleep pattern was better regulated.
We started treating a young boy who showed many classic symptoms of both Autism and ADHD as many of our patients do. His Mum’s focus was to see him feel happier about himself and to become a child that could ‘do more straightforward things that would make him happy’.
Just look at these two pictures of his artwork, pre and post treatment. The difference is stark and is a strong indicator of an improvement to this boy’s quality of life:
Quantifying progressIn writing this paper I can hear people saying, but what about actually “knowing” you have made progress? And how do you “know” that you have actually reduced the patient’s symptoms to a point that is relevant? And that is where we do resort to the more standardised definitions of ADHD, supplementing the progress we know we have made against our patients’ goals. We do this by using age related rating scales to numerically measure our patients’ progress. It is quite impactful to have numbers to discuss change and we rely on statistics all day, every day. The way we use numbers aligned to rating scales in ADHD 360 increases the impact even more. As well as giving our patients something concrete to see and a tangible demonstration of how far their treatment has come, our clinicians can see this as well, and frankly, it is a great motivator to see results in numbers.
For adults we use the Adult ADHD Self Report Scale (ASRS 1.1) developed by Lenard Adler and colleges in conjunction with the World Health Organisation.
Again, a simple instrument to use and re-use, the ASRS provides us with a baseline and progress checks for our adult patients.
We then test and retest as treatment follows its path until we have results that show that ADHD symptoms are in remission. This is very different to accepting “Oh the treatment has made a difference; he is much better now”. We now have a set of results, which when combined with the commentary against the patient’s goals, gives us a robust set of data to judge progress.
If we look at examples in real clinical work from ADHD 360’s patients we see dramatically illustrated results:
Rosie, aged 6 had results reduced from 51 to 23 in her SNAP-IV scores and her progress against her goals speak for themselves:
“1. Concentration to improve with learning – ‘Concentration has improved tenfold’, Rosie wants to interact more with others and is listening to instructions better. Rosie is more attentive and engrossed in doing things.
2. To slow down and rest when told – Appears a lot happier and calmer. Sitting down and interacting with parents. Can sit for longer periods”.
Paul, a 50+ year old adult, started with a baseline ASRS of 15/18 and after successful treatment this was reduced and sustained at 6.
Of his treatment he said “I am certainly feeling the benefit”.
Let’s take a few minutes to look at some basics in terms of measuring treatment success. Perhaps this can be achieved in pictures as much as words? Look at the change in this young girl’s (12 years old) handwriting following treatment:
Answering the “million dollar” question
Is your treatment optimal? To answer this question, we need to look at three things:
1. How is success being measured?
2. What are we measuring against?
3. If we want to measure success, how will we know what it looks like?
At ADHD 360 we answer all three of these questions. We quality assure that these have been satisfied and we can then safely discuss that we know what value we have added to their life.
We have a strapline for ourselves ‘more than your diagnosis’ and maybe our approach to defining and monitoring treatment success helps us to deliver to that promise. Optimal treatment is more than a diagnosis.
All pictures utilised in this article are used with the permission of the relevant patients and families.