Home-based research format may expand access to autism treatment studies
MIND Institute telehealth study found parent-led language testing in English and Spanish was effective
New research from the UC Davis MIND Institute suggests that parent-led testing delivered via telehealth may help reduce inequities in access to autism research.
The pilot study, published Nov. 18 in Frontiers in Rehabilitation Sciences, examined the feasibility of teaching native English and native Spanish-speaking parents to administer an Expressive Language Sampling (ELS) task to their sons and daughters with autism at home. The goal was to determine the effectiveness of ELS as an outcome measure, or a way of assessing treatments.
The parent-led test was feasible and reliable in both English and Spanish-speaking groups. The results could have important implications for treatment studies.
“This study illustrated the potential that technology has to help us reduce inequities in access to research as well as potentially beneficial treatments,” said MIND Institute Director and Professor in the Department of Psychiatry and Behavioral Sciences Leonard Abbeduto, who was the senior author on the paper. “It’s critical to include Spanish-speaking individuals in autism research so that we can create services and systems of care that are well-matched to their needs. This is really a question of social justice.”
Using language to measure outcomes in autism treatment
Language challenges are common in autistic individuals and can vary widely in their severity. They are often a target for treatment, but there is a need for better tests to measure treatment efficacy and to expand access to clinical trials.
ELS is a promising method for assessing language in treatment studies. It is a set of procedures used to collect and analyze spoken language in natural interactions. The goal is to gather language samples that are representative of the individual’s everyday abilities.
For this study, participants were asked to engage in storytelling using a wordless picture book as a prompt, a procedure known as narrative ELS (ELS-N). Typically, it is administered in a clinic by a professional examiner. But in this case, the researchers trained both English and Spanish-speaking parents to complete the task at home.
It’s critical to include Spanish-speaking individuals in autism research so that we can create services and systems of care that are well-matched to their needs. This is really a question of social justice.
The benefits of parent-led tests
“Sometimes children and adults - with or without neurodevelopmental conditions - can experience stress when it comes to cognitive testing, which is perfectly normal. When a parent is leading the task, it makes it more relaxed, and that’s of special value for autistic individuals who may struggle with social interactions,” explained Laura del Hoyo Soriano, a postdoctoral scholar in the Department of Psychiatry and Behavioral Sciences and the lead author on the study.
The research team recruited 22 parent-child pairs. All children had an autism diagnosis and ranged in age from 6-21 years. Eleven parents identified as native English speakers and 11 as native Spanish speakers. The parents were trained and coached in how to conduct the ELS task, with 19 finishing the training and 16 pairs completing the study. All training happened in the home via telehealth interactions with the researchers.
Parents recorded a video of their administrations of the ELS-N task, then sent the recording to the research team for evaluation and scoring. Results were very promising, showing that parents can learn and administer the test reliably.
“Parents are willing and highly capable partners in research, even when it requires considerable effort from them and has no immediate direct benefit to their children,” Abbeduto said. “We weren’t surprised at the parents’ success in achieving fidelity with the task, but we were surprised by how quickly they did so – and by their willingness to stick with the training despite having very busy lives.”
A new Spanish-language test
The study marks the first time that parents were trained to administer an ELS-N task at home via telehealth. It was also the first time a Spanish-language version of the test was evaluated and validated.
“Spanish-speaking individuals are a large and growing segment of the U.S. population. We must diversify our studies or many of the research results and treatments that we develop may not be a good fit for large groups of people,” Abbeduto said.
The research team noted that language use varied in bilingual families. In some, both parents and children performed the task in Spanish. In others, the parents communicated in Spanish while the children mainly spoke English. In one family of four, both parents and children performed the task in English, even though Spanish was the primary language of the parents. For this family, the parents received the training entirely in Spanish, except for the prompts to use with the children during the narrative task. The goal was for the task to match the way they usually interact at home.
“The study highlighted the diverse ways in which bilingual families communicate at home,” del Hoyo Soriano said. “It has given us new ways to think about the evaluation of these children in order to capture their real language abilities in a bilingual format.”
The pilot study results indicate that we should consider adapting other cognitive measures to a parent- or caregiver-administered format at home. This could be of special interest in intervention studies and help to establish greater equity in access to important research.
Telehealth and accessibility
The study also suggests that a telehealth format option removes a significant barrier to study participation. In surveys completed by parents afterward, the vast majority said the training was adequate and easy to learn. In fact, 12 of the 19 parents said that, in a clinical trial, they’d prefer to administer the tasks at home via telehealth rather than go to a clinic.
“The telehealth format allows families to take part who wouldn’t otherwise be able to participate, particularly those who live in rural areas or have children with behavioral challenges that make travel difficult,” del Hoyo Soriano noted.
The researchers plan to complete a larger scale validation of the ELS-N parent-led test next.
“The pilot study results indicate that we should consider adapting other cognitive measures to a parent- or caregiver-administered format at home,” del Hoyo Soriano said. “This could be of special interest in intervention studies and help to establish greater equity in access to important research.”
Coauthors on the study included Lauren Bullard, Cesar Hoyos Alvarez and Angela John Thurman of UC Davis.
Funding was provided by the National Institutes of Health, the UC Davis Clinical and Translational Science Center and the Intellectual and Developmental Disabilities Research Center at UC Davis.
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The UC Davis MIND Institute in Sacramento, Calif. was founded in 1998 as a unique interdisciplinary research center where families, community leaders, researchers, clinicians and volunteers work together toward a common goal: researching causes, treatments and potential prevention of challenges associated with neurodevelopmental disabilities. The institute has major research efforts in autism, fragile X syndrome, chromosome 22q11.2 deletion syndrome, attention-deficit/hyperactivity disorder (ADHD) and Down syndrome. More information about the institute and its Distinguished Lecturer Series, including previous presentations in this series, is available on the Web at mindinstitute.ucdavis.edu.