Patient involvement is essential in health care, as well as in medical research.
For this purpose, our research group at the University of Bergen is collaborating with a board of ADHD patient representatives. The panel is committed to provide suggestions for future research topics and feedback on our work. During a recent meeting, panel members were asked what they considered the most urgent (research) needs in this field.
Much to our surprise, all four panel members expressed almost univocal messages: “You must fix the school system”. “There is too little knowledge about ADHD among teachers”. “Schools either ignore our problems, or offer too little assistance, too late “.
Perhaps these complaints shouldn’t be that surprising? After all, ADHD symptoms typically appear in school settings. Whether an ADHD condition is formally diagnosed during childhood, or the diagnosis is made retrospectively in adults, most people with an ADHD diagnosis will tell that they had negative experiences during school and many also suffered from academic failure.
The connection between learning difficulties, ADHD symptoms and dropping out of school are obvious also in genetic studies. In fact, this connection inspired us to perform a molecular genetic study, where large scale data collected about the genetics of educational attainment (EA) was coupled to a genome wide association (GWA) studies on ADHD genetics. Taking advantage of this connection, this design was able to boost the statistical power of the ADHD GWA study.
Until recently, genome wide studies on ADHD have been small and failed to provide reliable genome wide significant association signals. When a conditional false discovery rate method was applied to GWA data on ADHD educational data, to identify ADHD-associated loci and loci overlapping between ADHD and EA, we identified five ADHD-associated loci, three of these being shared between ADHD and EA. These five novel loci associated with ADHD confirm that there is a shared genetic basis between ADHD and EA and may increase our understanding of the genetic risk architecture of ADHD .
From this study, we have learned: (1) the importance of patients and society being engaged our work, (2) that there is a strong connection between ADHD and failed educational attainment and (3) that this connection can be used to find ADHD susceptibility genes.
Finally , as our patients have explained; this is not only about persons with ADHD failing at school, but also about a school system failing to adapt their teaching to persons with ADHD-related problems. This is obviously also a field in need of future research and interventions.