ADHD: the outcomes of meds?

Arguably there are a lot of good reasons for taking the bus to work. I use the bus for 2 reasons, 1) it’s cheaper and 2) it gives me time to read.

Wind back to September 2005. My son’s relationship with school was becoming terminal & I have a fiercely independent streak. I didn’t, at that time, know his educational rights. All I knew was that he was becoming increasingly unhappy but no-one was listening, so my independent (or is that bloody-minded?) streak came to the fore. I fully expected to home-educate to ensure that all of his needs were met. I finally made a call I’d kept putting off, but no-one was going to tell me that I couldn’t educate my son myself. It went along the lines of: ‘Hello, I want to enquire about the science short-course, understanding human nutrition’. ‘Sorry but the course is full & registration closed last week’, ‘Oh, any space on introduction to the human genome?’ ‘Yes, how would you like to pay?’ That, as they say, was that – my first toe-dip in to the world of the Open University/degree-level study. Fast forward to 2015, 2 Ordinary and 1 Master’s degree later, I have found myself, for the first time in 9 years, without a module to study. While it is great that I save money by catching the bus, it is even better continuing with reading stuff!

So, the stuff I read this week was about the deployment of TAs, the statutory guidance to the Autism Act and ‘The long-term outcomes of interventions for the management of attention-deficit hyperactivity disorder in children and adolescents: a systematic review of randomised controlled trials’ by Parker et al (2013). Many of my son’s mates have ADHD as well as students I assess for access arrangements, so I have a bit of an interest beyond just work – plus my interest in the human genome! While the journal uses American spelling, the researchers are from Sheffield. The correspondence address is for ‘CAMHS’, so this paper is aimed more at the medical profession than teachers or parents. The researchers didn’t actually trial anything, rather they sifted & analysed what is already out there. Like all research, the sifting process discards not only pieces of research that do not fit the analysers predetermined criteria, but also *potentially* further renders invisible the participants that were already rejected by each original researcher/research team. I have a bit of an issue with that. We read in the papers ‘research found this, research found that’, but unless you’re reading the research paper, you’re going to be pretty much in the dark that participants had to meet specific criteria. A research in to ADHD doesn’t mean all children with ADHD so generalisability could arguably, be an issue. Further to that, Parker et al talk of ADHD being a highly co-morbid condition, which arguably again, acts to further reduce generalisability. However, their research merits reporting as for people like me, and perhaps more so for parents of children & young people (CYP) with ADHD, simply because it is downright interesting!

I don’t like quoting a swathe of text, for all kids of reasons, but I’m sure I can get away with the following (saves me paraphrasing):

Eight controlled trials were identified as being relevant, of duration ranging from 1 year to 8 years (at follow up). The total number of participants in the studies was 1,057, of whom 579 (54.7%) were from one cohort and included 26 different outcome measures.

Parker et al state that there is a high level of evidence that the use of medication can have a major beneficial effect for 80% of CYP compared to placebos – in the short term. Where non-med interventions are used (e.g. CBT), there is a moderate-to-high level of benefit, but little is known about long-term effectiveness. As those who live with someone who uses meds would know, meds can have some undesired side-effects such as poor growth, increased heart rate & nausea. Even so, Parker et al cites the number of those treated with meds in the UK has risen from 0.5 per 1000 to over 3.0 per 1000 over the last 30 years (220,000 prescriptions for stimulant meds in 1998 to 418,300 in 2004). Parker et al reports that a UK cohort (ages 15-21) followed-up after 5 years, had 69% still meeting the criteria for ADHD & were still known to services, continuing to exhibit high levels of antisocial behaviour, criminal behaviour and substance abuse. However, the rate of prescribing/adherence to medication dropped significantly from 15yrs. The researchers argue that this is suggestive that the ADHD symptoms were not optimally managed, creating on-going problems for the person, their family and society.

Parker et al’s paper, if you look it up, carries a pretty decent table of the research papers used in their study, quite handy if you like skim-reading! Studies looked at meds only, meds and non-med interventions combined and non-med interventions. Parker et all agree that there is a paucity of longitudinal studies examining the long-term effects of ADHD interventions. Within their discussion, they conclude that there is a case for the effectiveness of meds beyond one year and possibly up to 8 years, but with a reduction in effect size. They state that the lack of randomisation makes long-term interpretations difficult and perhaps more significantly, ‘additionally, as ADHD persists, those with the disorder will reach a similar level of functioning despite the initial level of severity or treatment provided, which will still be significantly below those without ADHD’.

I can’t help wondering though, if they’ve missed the point. Like too many of these papers do not seek qualitative data; they do not ask participants for their opinions. Why does the use of meds drop off from 15yrs or so? Are the medications currently available fit for purpose? How do they fit with a CYPs likes, dislikes and their right to choose? ADHD, as reported by Parker et al, positions the CYP as problematic. Their perspective does not encompass environmental, social and policy structures as problematic. I have to say that personally, I doubt that I would continue on a medication that made me feel constantly unwell, and by the time I reached 14-15 ‘Gillick competence’ would most definitely be in play (i.e. I would be mentally capable of making decisions about my own medical treatment). I’m not sure that a spoon full of sugar would help and without having sight of an end-point, what incentive is there for the CYP to continue to take the stuff? It’s not that I am anti-meds in the least, I take meds 3x per day myself as their benefits outweigh the side effects for me. However, I stopped taking the first ones after 4 days as they were hateful. The side effects of ADHD meds appear to be far from trivial and surely this is going to need to be addressed if a CYP is going to choose to take them on a long-term basis?

So, tomorrow I shall find myself back on the bus and reading a new paper, policy or document of some description. My journey with the OU may not yet have ended, but I shall contemplate on my next academic move as I continue reading.

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