Remotely monitoring treatment outcomes in patients with neurogenetic syndromes: A family-centered perspective

ABSTRACT

Remote assessment has been ongoing for years, however, the integration of remote protocols while considering the unique needs of patients with neurogenetic syndromes (NGS) is lacking. The need for remotely monitoring treatment outcomes has intensified with the ongoing COVID-19 pandemic due to closures, travel mandates, and COVID-19 related health concerns in individuals with NGS. Beyond the COVID-19 pandemic, remote assessment may become the “status quo” and potential benefits and caveats that should be considered. In this review, we first define remote assessment, reasons for conducting remote assessment including enhancing access to research, reducing participant burden, and reducing financial costs and conserving staff. Next, we address reasons to not conduct remote assessment including the digital divide, digital inequities in technology literacy, impact on rapport, trust-building, and community-centered work, particularly for marginalized populations, and task and method constraints. We then describe our remote assessment efforts centered around the caregiver, and future directions and next steps with an emphasis on user experiences (UX), ongoing need to address issues of access and equity and the importance of a whole-family approach given the heterogeneity of experiences in families with NGS.