Dr Fouad Alshaban, Senior Scientist, Qatar Biomedical Research Institute (QBRI), is co-Lead Principal Investigator of an ongoing Qatar National Research Fund-supported National Priorities Research Program (NPRP) research project titled ‘Prevalence of Autism Spectrum Disorders in Qatar’.
The goals of Dr Alshaban’s research project are to estimate the prevalence of autism-spectrum disorders among Qatari families, and other families residing in Qatar, before comparing these rates to other countries.
Dr Alshaban’s research interest lies in the epidemiology of genetic diseases and particularly in Autism Spectrum Disorder (ASD). He has published three books in the fields of public health, infectious diseases, and nutrition, and has had many articles published in medical and non-medical magazines and journals.
Please explain the scope of your ongoing research project.
At present no comprehensive survey has yet been conducted to estimate the prevalence of autism in Qatar, and as such, the prevalence rate of autism-spectrum disorders in Qatar is uncertain. Ours is the first fieldwork study conducted to discover the prevalence rate of ASD in the country. In total, we will visit every primary school in Qatar – over 200 in total – with a criterion to select all students aged between 5-12 years old.
What does the fieldwork for such a study involve?
Our research project has the collaboration of the Supreme Education Council through a letter of support sent to all primary schools – private and independent – in Qatar. We started contacting these schools when the three-year project began in September 2014.
We screen these primary schools and, for the students aged between 5 and 12, we send invitation letters and brochures to their families to explain ASD. These contain a social communication questionnaire, which is 40 ‘yes’ or ‘no’ questions that the parents can answer and send back to the schools, upon which time we collect the results and can take our assessment further. For full diagnosis of ASD, two tools are internationally recognized.
The first tool is the Autism Diagnostic Interview-Revised (ADI-R), in which 93 questions are asked of a parent about their child, with an algorithm that has been created upon their results that will tell if the child is autistic or not. In cases where the child might be borderline autistic, we have the Autism Diagnostic Observation Schedule (ADOS-2), which is an observational assessment. We ask the parent to bring the child along for the likes of construction tasks, where we provide the child with toys and observe their behavior. We then analyze the results and discern whether or not the student is exhibiting symptoms of ASD.
The overall screening of the primary schools involves the assessment of what we call low probability groups and high probability groups, the latter of which are among schools for students with special needs. By assessing students within both groups, we can calculate the prevalence rate of ASD in Qatar.
Why is it important to the nation that such a comprehensive study is undertaken?
When studying any disease, you have to know the prevalence rate: how many cases currently exist and how many new cases are there each year? You need to know the size of an issue in order to effectively plan a response. At this point, we don’t know the prevalence of ASD in Qatar. Instead, we rely on the international rates, which say that for every 68 newborns, one will develop autism by the age of three.
But we don’t know if that international rate is higher or lower than the rate in Qatar. To be sure about the prevalence rate, we have to conduct this study, which compels us to go beyond research of those in the country who have already been diagnosed. In some international cases, we have seen that the number of ASD cases diagnosed in low probability school groups have been double the rate of those students in high probability school groups. So you cannot simply take a guess about the prevalence rate in Qatar; you must screen every school because ASD is what its name suggests: it’s a spectrum. You can have very mild cases and severe cases.
The latter cases are easier to diagnose and are often diagnosed as a result of families noticing behavioral patterns and then seeking advice, which doesn’t often happen at the other end of the spectrum. Parents might think, in those cases, that their child is somewhat shy or anti-social, and think nothing more of it.
And let’s not forget that there can be unique contributing factors. For example, there are certain environmental factors in Qatar that act as a trigger to let the symptoms of ASD appear. There are so many: they can relate to the mother during or before pregnancy, whether the child is exposed to an infection, the socioeconomic status of the family, and genetic factors. Due to the fact that we are visiting more than 200 schools, it is fair to say that the fieldwork for this project is not easy, but I’m happy to say that we are on the right track.
How would you describe the ideal scenario for how your research is received upon publication of your eventual findings? What is the legacy that you hope to achieve?
The ideal scenario for me is first and foremost, to discover the real prevalence rate of ASD in Qatar. That data will be so important for healthcare providers in the country. And we are planning to fully assess the rates of all ethnic groups: Qataris, Arabs, non-Arabs. We will provide reliable information about the disease and of the contributing factors that exist here.
This study will ultimately provide a huge level of information and will be a springboard for the future of healthcare planning in Qatar, and my hope is that this study can be part of the legacy of QBRI. I’m very proud to be a part of a team that is seeking to make a huge contribution.