Expressive Language Sampling May Lead to Treatment Options for Fragile X Syndrome

By Danielle Bradshaw from In The Cloud Copy

Expressive language sampling, or ELS, could potentially help researchers better measure how well treatments work for patients with fragile X syndrome or other intellectual disabilities. Over time, more and more understanding and insight was gained regarding how intellectual disabilities work and as a result, treatments can now be tailored to suit specific disorders.

Ensuring that these treatments work though – actually testing them – requires meticulously arranged clinical trials. The tests for fragile X treatments have left much to be desired in the past, however, as over 24 have been tested and they’ve been shown to be mostly ineffective.

What is Fragile X Syndrome?

People with fragile X syndrome can experience a variety of developmental and learning disabilities as well as some cognitive impairment. It’s a genetic condition that is predominantly found in males but it can be found in females too. Fragile X can also result in anxiety, attention deficit disorder (ADD), and varying degrees of autism, depending upon the individual in question.

How ELS Was Chosen as an Effective Measure for Treatments

As stated, other methods of treatment testing had rather poor results. One major reason for this is due to something called the practice effect. Basically, it’s “practice makes perfect”; the more that the participants take part in a trial, the higher scores they get because they’ve done the tests so many times. This makes it rather hard to determine if the treatment is actually working or if the result merely came from repeated testing.

ELS was found to be a way to break the practice-effect pattern. Because language efficiency can be interconnected with intellectual disabilities, ELS is a useful tool in creating effect measures.

How ELS Works

ELS can be broken down into two parts; the first of which is conversation. In this portion (which on average was about 12 minutes for this study) the test administrator talks to the participant about something that they enjoy – hobbies, people they like, favorite movies – and then moves the conversation to a pre-made topic. The administrator then uses a script that was written in such a way that allows the patient to carry the conversation.

In the second part of the examination, the “narration” portion consists of the examiner showing the patient a picture book. The patient is given the opportunity to tell their version of the story from the book in their own words in about 10 to 15 minutes with limited input from the researcher.

Each part of the test is scrutinized by:

  • How talkative each participant is
  • if the words spoken are easily comprehended
  • The patient’s vocabulary
  • How complex the structure and formation of the patient’s words and sentences are

The Study and Results

106 participants between ages 6 to 23 were gathered and evaluated twice with each test taking place a month apart from each other. The majority of the patients – a total of 85 – were male. All of them possessed an IQ of 70 or lower and communicated mainly through speech. The number of patients that couldn’t or wouldn’t participate in the ELS examination was below 15% (around 15 patients) and mainly consisted of those who had lower IQs, had more readily apparent signs of autism, or were among the younger participants.

There was no overwhelming difference between either test, which seems to indicate that the practice effect was not in play. If that were the case, then there would be improved scores on the second test. The ELS test results were also looked at side by side with results gained by standardized questionnaires. The ELS results for vocabulary, word and sentence structure, and ease of comprehension stack up quite well with the questionnaire results. The same could not be said for lack of fluency and talkativeness, however.

The absence of correspondence in the latter two categories is still currently unknown at this time and using talkativeness and lack of fluency as effect measures is warned against. All in all, the study has proven that ELS can be used as an effective measure for treatments for fragile X and other similar disabilities.

Find the original story here.

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