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Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps.

Publication ,  Journal Article
Bangerter, A; Manyakov, NV; Lewin, D; Boice, M; Skalkin, A; Jagannatha, S; Chatterjee, M; Dawson, G; Goodwin, MS; Hendren, R; Leventhal, B ...
Published in: JMIR Ment Health
March 26, 2019

BACKGROUND: Currently, no medications are approved to treat core symptoms of autism spectrum disorder (ASD). One barrier to ASD medication development is the lack of validated outcome measures able to detect symptom change. Current ASD interventions are often evaluated using retrospective caregiver reports that describe general clinical presentation but often require recall of specific behaviors weeks after they occur, potentially reducing accuracy of the ratings. My JAKE, a mobile and Web-based mobile health (mHealth) app that is part of the Janssen Autism Knowledge Engine-a dynamically updated clinical research system-was designed to help caregivers of individuals with ASD to continuously log symptoms, record treatments, and track progress, to mitigate difficulties associated with retrospective reporting. OBJECTIVE: My JAKE was deployed in an exploratory, noninterventional clinical trial to evaluate its utility and acceptability to monitor clinical outcomes in ASD. Hypotheses regarding relationships among daily tracking of symptoms, behavior, and retrospective caregiver reports were tested. METHODS: Caregivers of individuals with ASD aged 6 years to adults (N=144) used the My JAKE app to make daily reports on their child's sleep quality, affect, and other self-selected specific behaviors across the 8- to 10-week observational study. The results were compared with commonly used paper-and-pencil scales acquired over a concurrent period at regular 4-week intervals. RESULTS: Caregiver reporting of behaviors in real time was successfully captured by My JAKE. On average, caregivers made reports 2-3 days per week across the study period. Caregivers were positive about their use of the system, with over 50% indicating that they would like to use My JAKE to track behavior outside of a clinical trial. More positive average daily reporting of overall type of day was correlated with 4 weekly reports of lower caregiver burden made at 4-week intervals (r=-0.27, P=.006, n=88) and with ASD symptoms (r=-0.42, P<.001, n=112). CONCLUSIONS: My JAKE reporting aligned with retrospective Web-based or paper-and-pencil scales. Use of mHealth apps, such as My JAKE, has the potential to increase the validity and accuracy of caregiver-reported outcomes and could be a useful way of identifying early changes in response to intervention. Such systems may also assist caregivers in tracking symptoms and behavior outside of a clinical trial, help with personalized goal setting, and monitoring of progress, which could collectively improve understanding of and quality of life for individuals with ASD and their families. TRIAL REGISTRATION: ClinicalTrials.gov NCT02668991; https://clinicaltrials.gov/ct2/show/NCT02668991.

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Published In

JMIR Ment Health

DOI

ISSN

2368-7959

Publication Date

March 26, 2019

Volume

6

Issue

3

Start / End Page

e11365

Location

Canada

Related Subject Headings

  • 5203 Clinical and health psychology
  • 4203 Health services and systems
  • 1117 Public Health and Health Services
 

Citation

APA
Chicago
ICMJE
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Bangerter, A., Manyakov, N. V., Lewin, D., Boice, M., Skalkin, A., Jagannatha, S., … Pandina, G. (2019). Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps. JMIR Ment Health, 6(3), e11365. https://doi.org/10.2196/11365
Bangerter, Abigail, Nikolay V. Manyakov, David Lewin, Matthew Boice, Andrew Skalkin, Shyla Jagannatha, Meenakshi Chatterjee, et al. “Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps.JMIR Ment Health 6, no. 3 (March 26, 2019): e11365. https://doi.org/10.2196/11365.
Bangerter A, Manyakov NV, Lewin D, Boice M, Skalkin A, Jagannatha S, et al. Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps. JMIR Ment Health. 2019 Mar 26;6(3):e11365.
Bangerter, Abigail, et al. “Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps.JMIR Ment Health, vol. 6, no. 3, Mar. 2019, p. e11365. Pubmed, doi:10.2196/11365.
Bangerter A, Manyakov NV, Lewin D, Boice M, Skalkin A, Jagannatha S, Chatterjee M, Dawson G, Goodwin MS, Hendren R, Leventhal B, Shic F, Ness S, Pandina G. Caregiver Daily Reporting of Symptoms in Autism Spectrum Disorder: Observational Study Using Web and Mobile Apps. JMIR Ment Health. 2019 Mar 26;6(3):e11365.

Published In

JMIR Ment Health

DOI

ISSN

2368-7959

Publication Date

March 26, 2019

Volume

6

Issue

3

Start / End Page

e11365

Location

Canada

Related Subject Headings

  • 5203 Clinical and health psychology
  • 4203 Health services and systems
  • 1117 Public Health and Health Services