Exploring the feasibility of collecting multimodal multiperson assessment data via distance in families affected by fragile X syndrome

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: Telehealth is an important tool in helping to provide services for hard-to-reach populations. One population that might benefit from telehealth are individuals with fragile X syndrome (FXS). Although FXS is the leading inherited cause of intellectual disability, it is nonetheless a low incidence disorder. Individuals with FXS and their families are involved in research studies, clinical trials and receive interventions – many of which are only offered in a few locations in the United States and thus, not easily accessible to many families. The current project explored the feasibility of using telehealth procedures to collect multimodal behavioural and psychological assessment data from these families. Methods: Participation in the current study involved online surveys, measures of physiological indices of stress, live interviews and observations of mother–child interactions conducted via distance videoconferencing using the family’s own technology when possible. Across all modes of data collection, we obtained information regarding the feasibility of participating entirely via distance by documenting missing data as well as each mother’s overall impression of participating via distance. Results: Our telehealth procedures were successfully implemented across a wide range of technology platforms with limited difficulty, and we documented little missing data due to technology-related challenges. Perhaps most importantly, however, our sample of mothers reported high satisfaction with participating via distance. Discussion: These findings suggest that a wide range of services and types of assessments may be amenable to telehealth procedures. Further, the findings have immediate applications as the field shifts towards telehealth due to the coronavirus disease 2019 (COVID-19) pandemic.

Original languageEnglish (US)
JournalJournal of Telemedicine and Telecare
DOIs
StateAccepted/In press - 2021

Keywords

  • assessment
  • fragile X syndrome
  • neurodevelopmental disabilities
  • Telehealth

ASJC Scopus subject areas

  • Health Informatics

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