Registering childhood aphasia

As in adults, brain injury in children can result in acquired speech and language disorders, i.e. aphasia. Acquired aphasia in children is a rare disorder and unlike aphasia in adults, hardly anything is known about the effect of speech therapy in children with aphasia. Speech and language therapists therefore have little evidence to base their therapy decisions upon. Still, acquired childhood aphasia seriously impedes daily life and development of these children.
The project ‘Registering childhood aphasia’ (in Dutch: Kinderafasie in Kaart) has been set up to gather more insight in acquired childhood aphasia. In the project, a national register containing data of children with aphasia is created. We will collect longitudinal data on language rehabilitation and development as well as on the satisfaction of children, parents and speech and language therapists on the speech and language therapy. A national database with systematically collected data provides an indispensable basis for improving the quality of care for these children.
In this multicenter study, led by Rijndam and Erasmus MC, over 20 health care institutions in the Netherlands are participating. In the first stage of the project, core outcome sets of language tests for four age categories were established via a Delphi-procedure. The first was a Delphi procedure to reach national consensus on the language tests to be administered. This part was funded by Kinderrevalidatiefonds Adriaanstichting. Subsequently, measuring trajectories were created to monitor outcomes (using the Gemstracker programme), and a pilot study was conducted at Rijndam and Klimmendaal. Inclusion in the national database has started in May 2021. The project is currently co-financed by the Stichting Afasie Nederland (Dutch Aphasia Association).