FASD provincial study sets a benchmark for diagnostic assessment tools

Earlier diagnosis can help children in the long run

Tamara Vineberg - 01 August 2019

Many children with Fetal Alcohol Spectrum Disorder (FASD) may have language difficulties and learning disorders and could also face anxiety, depression and issues with social skills. Earlier diagnosis results in earlier recommendations and interventions to help a child live with FASD. Diagnosing children with FASD, however, can be a challenge. Hasu Rajani would like to see all clinicians across Canada trained with the most up-to-date diagnostic tools available so children can access reliable and accurate assessments.

The physician and professor in the Division of General and Community Pediatrics recently co-authored a paper that surveyed all clinicians providing assessments for FASD diagnostic clinics in Alberta, to gain a better understanding of the provincial testing measures.

"FASD is a medical diagnosis and requires a multidisciplinary team approach. We gather data and reliable information from multiple sources, including caregivers, schools, social agencies and comprehensive neurobehavioural and neurocognitive assessments. The assessments are medical as well as functional, and include 10 brain domains," says Rajani.

Rajani joined the Lakeland Centre for FASD in Cold Lake in 2000, as a member of its multidisciplinary team, to assess and diagnose children prenatally exposed to alcohol. Through the centre, he began training other clinicians in various communities wanting to develop FASD diagnostic clinics. "The training was around consistency of diagnosis, what different terms meant and what tools could be used to assess and diagnose children with prenatal alcohol exposure. We wanted to ensure if an individual was diagnosed in Medicine Hat and they came to Edmonton, we would know what their diagnostic code meant," explains Rajani.

Consistency became more important when the Canadian Guideline for FASD Diagnosis was revised in 2015. The guidelines recommended more objective assessments of the various brain domains, using standardized testing tools. Since then, Rajani and his colleagues have trained teams provincially and nationally.

An Institute of Health Economics study on the epidemiology of FASD in Alberta over 10 years found that the incidence and prevalence of FASD is higher than earlier estimates. In 2012, there were about 46,000 individuals living with FASD in Alberta. Annually, there were approximately 14 to 44 new cases per 1,000 births from 2003 to 2014.

"Our study revealed that some clinicians were using some older test measures and we are certainly providing them feedback that they should move to using the most current standardized codes. Our aim is to ensure they have been made aware of the recommended tests and have received training where needed," says Rajani, who is also part of a team who developed an online training module to help spread the knowledge about the updated assessment and diagnosis of FASD. "For me, the goal is to raise awareness of FASD assessment and diagnosis process. By doing so, we can be more consistent and hopefully, we will be better able to support these individuals."