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      Bringing the Laboratory Home: PANDABox Telehealth-Based Assessment of Neurodevelopmental Risk in Children

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          Abstract

          Background

          Advances in clinical trials have revealed a pressing need for outcome measures appropriate for children with neurogenetic syndromes (NGS). However, the field lacks a standardized, flexible protocol for collecting laboratory-grade experimental data remotely. To address this challenge, we developed PANDABox (Parent-Administered Neurodevelopmental Assessment), a caregiver-facilitated, remotely administered assessment protocol for collecting integrated and high quality clinical, behavioral, and spectral data relevant to a wide array of research questions. Here, we describe PANDABox development and report preliminary data regarding: (1) logistics and cost, (2) caregiver fidelity and satisfaction, and (3) data quality.

          Methods

          We administered PANDABox to a cohort of 16 geographically diverse caregivers and their infants with Down syndrome. Tasks assessed attention, language, motor, and atypical behaviors. Behavioral and physiological data were synchronized and coded offline by trained research assistants.

          Results

          PANDABox required low resources to administer and was well received by families, with high caregiver fidelity (94%) and infant engagement (91%), as well as high caregiver-reported satisfaction (97% positive). Missing data rates were low for video frames (3%) and vocalization recordings (6%) but were higher for heart rate (25% fully missing and 13% partially missing) and discrete behavioral presses (8% technical issues and 19% not enough codable behavior), reflecting the increased technical demands for these activities.

          Conclusion

          With further development, low-cost laboratory-grade research protocols may be remotely administered by caregivers in the family home, opening a new frontier for cost-efficient, scalable assessment studies for children with NGS other neurodevelopmental disorders.

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          Separate but equal? A comparison of participants and data gathered via Amazon’s MTurk, social media, and face-to-face behavioral testing

          Krista Casler, Lydia Bickel, Elizabeth Hackett (2013)
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            The Rise of Consumer Health Wearables: Promises and Barriers

            Lukasz Piwek, David A F Ellis, Sally Andrews … (2016)
            Lukasz Piwek and colleagues consider whether wearable technology can become a valuable asset for health care.
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              National Institutes of Health approaches to dissemination and implementation science: current and future directions.

              Russell E. Glasgow, Cynthia Vinson, David Chambers … (2012)
              To address the vast gap between current knowledge and practice in the area of dissemination and implementation research, we address terminology, provide examples of successful applications of this research, discuss key sources of support, and highlight directions and opportunities for future advances. There is a need for research testing approaches to scaling up and sustaining effective interventions, and we propose that further advances in the field will be achieved by focusing dissemination and implementation research on 5 core values: rigor and relevance, efficiency, collaboration, improved capacity, and cumulative knowledge.
              Article 0 comments Cited 244 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Journal
                Journal ID (nlm-ta): Front Psychol
                Journal ID (iso-abbrev): Front Psychol
                Journal ID (publisher-id): Front. Psychol.
                Title: Frontiers in Psychology
                Publisher: Frontiers Media S.A.
                ISSN (Electronic): 1664-1078
                Publication date (Electronic): 28 July 2020
                Publication date Collection: 2020
                Volume: 11
                Electronic Location Identifier: 1634
                Affiliations
                [1] 1Department of Psychological Sciences, Purdue University , West Lafayette, IN, United States
                [2] 2Department of Psychiatry and Behavioral Sciences, MIND Institute, University of California, Davis , Davis, CA, United States
                Author notes

                Edited by: Eva Aguilar Mediavilla, University of the Balearic Islands, Spain

                Reviewed by: Jeanine Van Klink, Leiden University Medical Center, Netherlands; Pamela Bryden, Wilfrid Laurier University, Canada

                *Correspondence: Bridgette L. Kelleher, bkelleher@ 123456purdue.edu

                This article was submitted to Developmental Psychology, a section of the journal Frontiers in Psychology

                Article
                DOI: 10.3389/fpsyg.2020.01634
                PMC ID: 7399221
                PubMed ID: 32849001
                SO-VID: fd4eb800-c270-4587-8261-6a606172b937
                Copyright © Copyright © 2020 Kelleher, Halligan, Witthuhn, Neo, Hamrick and Abbeduto.
                License:

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                Date received : 14 January 2020
                Date accepted : 16 June 2020
                Page count
                Figures: 1, Tables: 4, Equations: 0, References: 55, Pages: 14, Words: 0
                Funding
                Funded by: National Institute of Mental Health 10.13039/100000025
                Award ID: K23MH111955
                Award ID: F31DC018219
                Categories
                Subject: Psychology
                Subject: Original Research

                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: telehealth,remote assessment,down syndrome,neurogenetic syndromes,heart rate,autism
                Data availability:
                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: telehealth, remote assessment, down syndrome, neurogenetic syndromes, heart rate, autism

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