Observance gap between users: Lessons from a trial of a smartphone application for parental empowerment in Autism Spectrum Disorders (Preprint)

Background: Conflicting data emerge from literature regarding the actual use of smartphone apps in medicine; some considered the introduction of smartphone apps in medicine to be a breakthrough, while others suggested that, in real-life, the use of smartphone apps in medicine is disappointingly low. Yet, digital tools become more present in medicine daily. To empower parents of a child with autism spectrum disorder, we developed the Smartautism smartphone app, which asks questions and provides feedback, using a screen with simple curves. Objective: The purpose of this study was to evaluate usage of the app by caregivers of individuals with autism spectrum disorders. Methods: We conducted a prospective longitudinal exploratory open study with families that have a child with autism spectrum disorder. Data were recorded over a period of 6 months, and the outcome criteria were (1) overall response rates for a feedback screen and qualitative questionnaires, and (2) response rates by degree of completion and by user interest, based on attrition. Results: Participants (n=65) had a very high intent to use the app during the 6-month period (3698/3900 instances, 94.8%); however, secondary analysis showed that only 46% of participants (30/65) had constant response rates over 50%. Interestingly, these users were characterized by higher use and satisfaction with the feedback screen when compared to low (P<.001) and moderate (P=.007) users. Conclusions: We found that real or perceived utility is an important incentive for parents who use empowerment smartphone apps.