Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19.

BACKGROUND: Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19. OBJECTIVE: The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic. METHODS: A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic. RESULTS: Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048). CONCLUSIONS: Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

Rapid Transition to Telemedicine During the COVID-19 Pandemic: Medical Genetics Experience.

BACKGROUND: The coronavirus SARS-CoV-2 (COVID-19) pandemic interrupted delivery of outpatient health care to minimize risk of exposure. This pandemic threatened to increase longstanding national concerns about access to both initial and follow-up genetics clinics services. The Medical Genetics Clinic at the University of Wisconsin-Madison Waisman Center (WCMGC) rapidly transitioned to offering appointments using telemedicine in March 2020 when the public health emergency for COVID-19 pandemic was declared. METHODS: Datasets were reviewed for the periods April - July 2019 (pre-COVID baseline) and April - July 2020 (COVID project data). Patient schedules were accessed to determine the number of appointments kept, no-shows, and late cancellations. A telephone survey was utilized to assess patient satisfaction with telemedicine. RESULTS: Fewer appointments were missed and providers completed more clinic visits after transitioning to telemedicine. Patients and their families were equally satisfied with care received and were amenable to telemedicine use in the future. Telemedicine allowed WCMGC to continue serving patients during a period of restricted on-site services, suggesting its continuation would improve access to genetic services.