Constructing a Dutch Register on Childhood Aphasia

Aphasia is a language deficit resulting from brain damage, usually occurring in adults after stroke. Though rare, children with acquired brain injury can also suffer from aphasia. As this group is very heterogeneous regarding etiology, age and level of language acquisition, little is known on the effectiveness of speech and language treatment (SLT) on acquired childhood aphasia (ACA). RCTs are nearly impossible and large observational studies are lacking. Still, ACA is a chronic condition in many of these children, seriously impeding daily life. To improve care for children with ACA we need accurate longitudinal data.

Objective: To construct a Dutch national register on ACA, with five-year data on language function, SLT and satisfaction with SLT from stakeholders.

Design: a longitudinal prospective observational study.

Participants: Children in the age of 2–18 years, requiring SLT for acquired language or communication problems after brain injury.

Methods: Core outcome sets of language tests for four age categories were established via a Delphi-procedure among professionals of 23 Dutch health-care institutions. A pilot of six months was conducted in two rehabilitation centers to test and optimize online data collection. Questionnaires on medical history concerning brain injury, psychosocial and SLT data, were completed by parents and SL-therapists in the online data collection program Gemstracker®. Language tests were conducted within a month of onset and 6 months later. We present here the results of the pilot.

Results: The response rate was 86%. In the course of six months 18 children from 2 to 17 years old were included. ACA was caused by a stroke (n = 7), trauma (n = 7), epilepsy (n = 1), a tumor (n = 2) and one cause was unclear. In spontaneous speech 35% of the children were severely impaired (unable to express themselves without help in simple conversations), 65% were mildly impaired. Severe word finding difficulties were found in a third of the children. Six months later, 38% of the children improved in spontaneous speech and word finding, but none of them showed complete recovery of their language problems. In contrast, language difficulties deteriorated in 12% and remained stable in 50% of the children.

Conclusion: The pilot phase showed a large willingness among parents to participate in the Dutch register on ACA. There are only a few longitudinal studies on language recovery after ACA, most of them in small groups. In line with these studies, our data suggest that prognosis of language recovery after ACA is not favorable. Until now, determinants for language recovery in ACA have not been determined. There is a great need for large observational longitudinal studies to obtain more insight in ACA, its impact on functioning in daily life and possible ways to improve communication. The Dutch register on ACA will enable such studies.