Design and methods for understanding the state of cystic fibrosis care amid the COVID-19 pandemic

Abstract

Background Novel therapies have dramatically changed cystic fibrosis (CF) and innovative care delivery systems are needed to meet future patient needs. Telehealth has been shown to be an efficient and desirable form of care delivery. The COVID-19 pandemic caused a rapid shift to telehealth, and this presented a unique opportunity to study facilitators, barriers, and satisfaction with this mode of care delivery. We aim to report survey methods, demographics and telehealth use among CF care programs, patients, and families during the pandemic. Methods CF programs completed two surveys between July 29 and September 18, 2020, and between April 19 and May 19, 2021. Patients and families completed a similar survey between August 31 and October 30, 2020. The surveys addressed topics assessing the pandemic's financial impact, telehealth modes and experiences, licensure and reimbursement issues, health screening, and remote monitoring. Quantitative data were analyzed with descriptive statistics and were compared to the CF Foundation Patient Registry. Results Most programs (278 at timepoint one and 274 at timepoint two) provided telehealth during the pandemic. The percent of visits containing either telephone or video components changed from 45% to 25% over the time periods. Additionally, 424 patients and families from various ages and backgrounds responded to the survey and 81% reported having a telehealth visit. Conclusions The pandemic accelerated telehealth adoption and these datasets are a valuable source for exploring telehealth barriers and facilitators, the quality-of-care experience, financial and workforce implications, the impact on underrepresented populations, and implications for coverage and reimbursement.

Real‐world feasibility of short‐term, unsupervised home spirometry in CF

“…1 During the COVID-19 pandemic, there was a rapid shift to telehealth services to maintain access to ambulatory care. 2 PwCF were eager for solutions to the limited in-person assessments 3 and there was widespread adoption of home spirometry in the CF population in the United States 4 and globally. 5 Prior validation studies of various devices demonstrated concordance to in-clinic measures in a supervised setting, 6,7 with conflicting findings of accuracy in an unsupervised setting.…”

Modificações no tratamento fisioterapêutico respiratório de pacientes portadores de fibrose cística advindas da pandemia por Covid-19 no estado do Piauí

“…Um estudo realizado por Dowd et al (2021) nos Estados Unidos mostra uma abordagem ampla do uso dos serviços de telessaúde no período mais crítico da pandemia, voltados para o atendimento de pessoas com FC, onde eram oferecidos por programas de tratamento vários níveis de serviços, que tiveram boa aceitação pela população, sendo que cerca de 50% aderiram a essa forma de consultas remotas. Ademais, foi possível observar os bons resultados do sistema, que contribuíram para redução das perdas ocasionadas pela suspensão das consultas e tratamentos.…”

A year in review: Real world evidence, functional monitoring and emerging therapeutics in 2021

“…The SARS-2-CoV2 pandemic has led to significant changes in health care delivery for PwCF. A widespread surge in ‘tele’ or digital health has occurred [ 6 , 7 ]. In general, this has been reasonably successfully implemented and accepted by PwCF and care providers, particularly adults [8] , [9] , [10] , [11] , [12] .…”

“…Disparities in high speed internet access and technology may create a ‘digital divide' [ 9 , 12 , 17 ]. Whilst the surge in telehealth has subsided and confidence in returning to face to face visits has grown, in person consultations will probably not return to pre pandemic levels [ 6 , [10] , [11] , [12] , [13] , [14] ]. Health care delivery has evolved and there is much work to do with evaluation and implementation of new hybrid models that address the individual needs of PwCF.…”