Long-term outcomes of ADHD: psychosocial, physical and societal, functioning of adults diagnosed with ADHD in childhood. Targets for optimization of treatment and (secondary) prevention.

ADHD is a psychiatric disorder with a prevalence of 5% in children and 3% in
adults. The disorder is a risk factor for hampering development on the long
term. Trajectories of ADHD spanning from childhood to adulthood are
heterogenous. A group of children show complete remission in the longer term,
whereas an other group of children shows a worsening pattern of functioning,
with huge personal and societal consequences. This protocol concerns a
follow-up measurement of the Dutch NeuroIMAGE cohort, that consists of
(currently) adults who received an ADHD diagnosis as a child, their brothers
and sisters and (currently) adults who hadn*t had an ADHD diagnosis as a child.
Worldwide, the cohort is unique in its size as well as in its variety of
measures, on different levels (genotypic, imaging, cognitive, clinical,
environmental).
With this follow-up we will 1) characterise long term outcomes and trajectories
of ADHD and 2) predict these outcomes and trajectories. We will take into
account a great variety of outcome measures, such as psycho-social functioning,
physical functioning and social (societal?) functioning. Furthermore we aim to
investigate subjective burden of the disorder, stigma and experienced positive
aspects of the disorder. In terms of predictors we have information on ADHD and
comorbid symptoms, genetic, neuroimaging, family and environmental factors, as
well as medication use.
Our aim is to model developmental trajectories that predict functional outcome
of ADHD by using the data we will collect now as well as data that we collected
in earlier waves of this cohort. Next to that we aim to investigate long term
effects of medication use. This hasn*t been done in a cohort of this size.
With the addition of this new wave of data collection for this cohort we aim to
be an even better position to disseminate our results to the clinic and serve
patients as well as families by being able to give a more precise prediction of
the development of the disorder when diagnosing.

(a) investigate long term functional outcomes of ADHD; *
(b) identify factors that predict a favourable as well as non-favourable
outcome/trajectory of ADHD;
(c) investigate long term effects of the use of stimulants; in kaart te
brengen.

(retro- as well as prospective) cohort study

Participation consists of 1) filling out online questionnaires 2) symptom
screeners and a clinical interview (in one or two parts) and cognitive and
physical measures. Furthermore we ask consent for reviewing pharmacy records. A
focus group of participants thought this burden is acceptabele to them. Risk of
participation is negligable.