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J Cyst Fibros ; 20 Suppl 3: 49-54, 2021 12.
Article in English | MEDLINE | ID: covidwho-1587337


BACKGROUND: Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. METHODS: We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). RESULTS: A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p<.01). Telehealth use did not differ by health insurance and was similarly offered independent of financial status. Compared to PwCF who denied financial constraints, those who reported financial difficulties found telehealth more difficult to use (p=.018) and were less likely to think that their concerns (p=.010) or issues that mattered most to them (p=.020) were addressed during telehealth. Programs perceived lack of technology, language barriers, and home conditions as barriers to telehealth in vulnerable populations. CONCLUSION: PFSoC and SoC1 identified differences in telehealth use and care perceptions by ethnicity, race, and socioeconomic characteristics. Further studies are needed to understand how telehealth can change access to CF care in diverse subpopulations.

COVID-19 , Communication Barriers , Cystic Fibrosis , Minority Health , Telemedicine , COVID-19/epidemiology , COVID-19/prevention & control , Communicable Disease Control/methods , Cystic Fibrosis/economics , Cystic Fibrosis/ethnology , Cystic Fibrosis/psychology , Cystic Fibrosis/therapy , Financial Stress/ethnology , Health Services Accessibility/organization & administration , Health Services Accessibility/trends , Healthcare Disparities/ethnology , Healthcare Disparities/standards , Humans , Minority Health/ethnology , Minority Health/standards , Minority Health/statistics & numerical data , Needs Assessment , Organizational Innovation , SARS-CoV-2 , Socioeconomic Factors , Telemedicine/organization & administration , Telemedicine/standards , United States/epidemiology , Vulnerable Populations/statistics & numerical data
Contemp Clin Trials Commun ; 24: 100871, 2021 Dec.
Article in English | MEDLINE | ID: covidwho-1527630


RVA Breathes, a community program to improve asthma management and care coordination among children living in a low-income, urban area, is being evaluated in a randomized clinical trial. In March 2020, RVA Breathes was converted to a remote program due to the COVID-19 pandemic; this report provides an update on the modifications made to the RVA Breathes trial. Additionally, given that families in the program have been disproportionally impacted by both COVID-19 and significant social unrest at both the local and national level, strategies used to enroll and engage families in the trial who bore disproportionately high burdens during this time period are outlined. Remote sessions (telephone or video) for families enrolled in the program prior to the onset of COVID-19 began in April 2020; enrollment of new families began remotely in July 2020 using adapted consent procedures. Baseline, intervention, and follow-up sessions were delivered either via the telephone or video depending upon family preference. Strategies were implemented to engage caregivers and children in completing measures over the telephone or video versus in person. Tangible intervention materials and participant payments were dropped off at family homes using contactless procedures. Our team was able to adapt and safely continue a large, community-based clinical trial, despite the increased health risks and social isolation mandates from the pandemic, by transitioning to a remote format. Challenges remain in determining whether RVA Breathes as a remote program has had the same impact on child asthma as the face-to-face interventions that comprised its original format.

J Cyst Fibros ; 20(4): 564-565, 2021 07.
Article in English | MEDLINE | ID: covidwho-1251298