Background

People with fragile X syndrome experience different strengths and weaknesses than neurotypical people. One of these differences is in working memory, the type of short-term memory we use every day to learn, solve problems, or do other similar thinking tasks. People with fragile x often have specific difficulties with working memory, which makes other related thinking tasks more difficult as well. Recently, research showed that specialised computer games could help with working memory skills.

Why did we do this study?

Research showed these computer programs could be helpful, so we set out to find out  if they were suitable for people with fragile X to use?  Also if  there were any real-life benefits of using the computer program? 

To answer these questions we ran this pilot study on one of these programs called Cogmed^TM. We wanted to know how usable Cogmed^TM was for children and adults with Fragile x syndrome. We also wanted to know whether using Cogmed^TM really helped them with their working memory skills and the other cognitive skills depending on working memory.

What did we do?

20 people with fragile x syndrome took part in the study: 11 children (aged on average 11.7 years old) and 9 adults (aged on average 27.2 years old). They all used the same version of the Cogmed^TM program (which did not need them to be able to read), 5 days a week, for 5 weeks.

All the participants also completed a background questionnaire, an IQ assessment, and assessments of their cognitive skills and their behaviour. Someone who knew them well also completed a stress questionnaire. All these questionnaires and assessments (other than the IQ assessment) were completed 3 times: at the beginning of the study (before using Cogmed^TM), after the 5 weeks spent using Cogmed^TM, and then again 5 months later with a final feedback form. Thanks to these 3 time points, we were able to see if their personal scores had changed right after using Cogmed^TM, and whether these changes were still there several months later. 

What did we find?

We found that even though both children and adults were able to complete the Cogmed^TM program, more of the children were able to complete the full 5-weeks training programme. 

We also found that those who finished the 5-weeks programme had higher baseline working memory skills (before using Cogmed^TM) than those who did not. In other words, those with better working memory skills to begin with were more likely to finish the intervention.

We found that participants who finished the 5-weeks programme improved their Cogmed^TM scores and their social responsiveness. 

We concluded that it was manageable for children and adults with fragile X to use Cogmed^TM, that Cogmed^TM seems to be somewhat useful, but also that we need more research to better understand how computer programs like Cogmed^TM can help people with fragile X.

Outputs

We are currently writing up a scientific article to share our findings, but Sonya has already given talks about the study at several conferences and seminars:

• Working Memory and Fragile X – The Fragile X Society Family Conference, organised by The Fragile X Society (May 2016)

• Can computerised working memory interventions be feasible and effective for individuals with fragile X syndrome – Multi-Disciplinary Innovations in Developmental Science: New findings and research avenues from Medicine, Psychology and Education, organised by The Patrick Wild Centre and the Salvesen Mindroom Centre (March 2016)

• Fragile x syndrome and working memory, what do we know? – Online working memory week, organised by Pearson Assessments (November 2015)

Sonya also presented a poster about the study:

• Computerised working memory training in individuals with fragile X syndrome: A pilot study (2016) The Fragile x Society Conference, Birmingham

Who conducted and funded the project?

Dr Sonya Campbell (Research Fellow in Clinical Psychology) and Dr Andrew Stanfield (Senior Clinical Research Fellow) ran this study, and the Baily Thomas Charitable Foundation funded it.