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Bullard L, Harvey D, Abbeduto L. Exploring the feasibility of collecting multimodal multiperson assessment data via distance in families affected by fragile X syndrome. J Telemed Telecare. 2021;1357633X211003810doi: 10.1177/1357633X211003810.
Bullard, L., Harvey, D., & Abbeduto, L. (2021). Exploring the feasibility of collecting multimodal multiperson assessment data via distance in families affected by fragile X syndrome. Journal of telemedicine and telecare, 1357633X211003810. https://doi.org/10.1177/1357633X211003810
Bullard, Lauren, et al. "Exploring the feasibility of collecting multimodal multiperson assessment data via distance in families affected by fragile X syndrome." Journal of telemedicine and telecare vol. (2021): 1357633X211003810. doi: https://doi.org/10.1177/1357633X211003810
Bullard L, Harvey D, Abbeduto L. Exploring the feasibility of collecting multimodal multiperson assessment data via distance in families affected by fragile X syndrome. J Telemed Telecare. 2021 Apr 12;1357633X211003810. doi: 10.1177/1357633X211003810. Epub 2021 Apr 12. PMID: 33840279; PMCID: PMC8505575.
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J Telemed Telecare. 2021 Apr 12;1357633X211003810. doi: 10.1177/1357633X211003810. Epub 2021 Apr 12.

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

Journal of telemedicine and telecare

Lauren Bullard, Danielle Harvey, Leonard Abbeduto

Affiliations

  1. MIND Institute, University of California, Davis, USA.
  2. Department of Psychiatry and Behavioral Sciences, University of California, Davis, USA.
  3. Division of Biostatistics, Department of Public Health Sciences, University of California, Davis, USA.

PMID: 33840279 PMCID: PMC8505575 DOI: 10.1177/1357633X211003810

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.

Keywords: Telehealth; assessment; fragile X syndrome; neurodevelopmental disabilities

References

  1. Clin Neuropsychol. 2020 Oct - Nov;34(7-8):1367-1379 - PubMed
  2. Pediatrics. 2016 Feb;137 Suppl 2:S167-75 - PubMed
  3. J Autism Dev Disord. 2020 Mar;50(3):779-797 - PubMed
  4. Lang Speech Hear Serv Sch. 2003 Oct 1;34(4):320-331 - PubMed
  5. J Autism Dev Disord. 2013 Dec;43(12):2953-69 - PubMed
  6. J Neurodev Disord. 2020 Apr 22;12(1):12 - PubMed
  7. J Autism Dev Disord. 2019 Jun;49(6):2461-2475 - PubMed
  8. Contemp Clin Trials. 2015 Nov;45(Pt B):226-232 - PubMed
  9. J Speech Lang Hear Res. 2018 Dec 10;61(12):3023-3037 - PubMed
  10. J Autism Dev Disord. 2015 Aug;45(8):2411-28 - PubMed
  11. Telemed J E Health. 2014 Jun;20(6):559-62 - PubMed
  12. Int J Lang Commun Disord. 2019 Mar;54(2):281-291 - PubMed
  13. Am J Med Genet A. 2014 Jul;164A(7):1648-58 - PubMed
  14. Am J Phys Med Rehabil. 2000 Mar-Apr;79(2):114-23 - PubMed
  15. Downs Syndr Res Pract. 2006 Aug;11(1):18-28 - PubMed
  16. J Autism Dev Disord. 2015 Dec;45(12):3877-90 - PubMed
  17. Dev Neurorehabil. 2018 Jan;21(1):48-63 - PubMed
  18. J Autism Dev Disord. 2020 Sep;50(9):3432-3439 - PubMed
  19. N Engl J Med. 2017 Oct 19;377(16):1585-1592 - PubMed
  20. J Autism Dev Disord. 2017 Mar;47(3):728-743 - PubMed
  21. Front Genet. 2018 May 16;9:173 - PubMed
  22. Am J Speech Lang Pathol. 2016 Feb;25(1):46-66 - PubMed
  23. N Engl J Med. 2016 Jul 14;375(2):154-61 - PubMed
  24. Child Care Health Dev. 2009 Mar;35(2):250-6 - PubMed
  25. Front Psychol. 2020 Jul 28;11:1634 - PubMed
  26. J Autism Dev Disord. 2017 Mar;47(3):744-767 - PubMed
  27. J Am Acad Dermatol. 2020 May;82(5):1213-1214 - PubMed
  28. Ment Retard Dev Disabil Res Rev. 2007;13(1):36-46 - PubMed
  29. BMJ Open. 2019 Oct 22;9(10):e028525 - PubMed
  30. J Speech Lang Hear Res. 2015 Jun;58(3):920-33 - PubMed
  31. J Autism Dev Disord. 2017 Sep;47(9):2814-2825 - PubMed

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