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

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.

COVID-19 and Food-Related Outcomes in Children with Autism Spectrum Disorder: Disparities by Income and Food Security Status.

BACKGROUND: Limited research suggests increased adverse behavioral outcomes, such as distractibility and hyperactivity, among children with autism spectrum disorder (ASD) as a result of coronavirus 2019 (COVID-19); however, little is known about how the pandemic has impacted food-related behaviors among children with ASD. OBJECTIVE: This study characterizes the impact of the pandemic on access to preferred foods and eating behaviors among children with ASD. METHODS: Caregiver proxies (n = 200) participated in a cross-sectional, online survey investigating the impact of COVID-19 on reported food and eating behaviors of children, ages 2-17 y. Logistic regression models were used to assess the magnitude of association of a change in the child's eating behaviors and in food availability, overall and by household income and food security status. RESULTS: A majority of respondents reported a moderate-to-large impact on their child's eating behaviors (57%) since the onset of COVID-19, and 65% reported unavailability of their child's preferred foods. Increased risk of a moderate-to-large impact on children's eating behaviors was associated with shelter regulations compared with no regulations (OR: 2.30; 95% CI: 1.12, 4.72), food insecurity compared with security status (OR: 2.60; 95% CI: 1.45, 4.67), and household income of <$50,000 compared with ≥$100,000 (OR: 2.33; 95% CI: 1.02, 5.29). The pandemic also amplified the risk of food unavailability by household food security status (food insecure vs. secure; OR: 4.13; 95% CI: 2.12, 7.69) and across income levels (<$50,000 vs. ≥$100,000; OR: 3.48; 95% CI: 1.42, 8.55; and $50,000 to <$100,000 vs. ≥$100,000; OR: 4.00; 95% CI: 1.71, 9.34). Reported frequencies of consumption of meat, seafood, vegetables, and 100% fruit juice significantly decreased among the children post-onset of COVID-19, while frequency of consumption of sweets increased. CONCLUSIONS: A large proportion of caregivers reported substantial COVID-19 impacts on food availability and eating behaviors of children with ASD, especially among low-resource dyads. This study highlights the added burden of existing disparities due to the pandemic on children living with ASD.

COVID-19 and behaviors in children with autism spectrum disorder: Disparities by income and food security status.

BACKGROUND: Research on the impact of the COVID-19 pandemic on behaviors of children with autism spectrum disorder (ASD) is lacking. AIMS: This study investigates the relationship between COVID-19 and behaviors of children with ASD living in the United States. METHODS AND PROCEDURES: Parents and caregivers (n = 200) across the United States, as proxies for children 2-17 years of age with ASD, participated in an online survey querying changes in overall behavior and 15 specific behaviors during the COVID-19 pandemic. Logistic regression was used to assess the association of a moderate-to-large impact on the child's overall behavior with household income level and food security status. OUTCOMES AND RESULTS: A majority of respondents reported a moderate-to-large impact on the child's overall behavior (74 %) due to COVID-19. Several specific behaviors were also affected. Stratifying by income level and food security status revealed disparities in the impact on overall behavior and most specific behaviors. Compared to a household income ≥$100 K, an income <$50 K was associated with an increased risk of moderate-to-large impact on the child's overall behavior (odds ratio (OR): 4.07, 95 % CI: 1.60, 10.38). Food insecurity also significantly impacted this risk, even after adjusting for potential confounding factors (OR: 3.31, 95 % CI: 1.13, 9.66). CONCLUSIONS AND IMPLICATIONS: Our findings show a large proportion of caregivers reporting moderate-to-large changes post-COVID-19 in the behaviors of U.S. children with ASD, particularly in families with low income and/or food insecurity. This study highlights the effects of existing disparities on children with ASD and their families during this unprecedented time.