- •The COVID-19 pandemic resulted in the use of telehealth to deliver the cystic fibrosis (CF) care model.
- •Fewer individuals with CF met recommendations for care in 2020 despite widespread use of telehealth.
- •Use of telehealth did not equate to adherence to all aspects of CF care.
- •Certain demographic, socioeconomic and CF-related disease factors are associated with telehealth use.
The COVID-19 pandemic resulted in the use of telehealth to deliver the cystic fibrosis (CF) care model, which recommends routine follow-up for monitoring of nutritional status, bacterial culture surveillance, pulmonary function testing, and screening for CF-related complications such as diabetes or osteoporosis.
The objective of this study was to use Cystic Fibrosis Foundation Patient Registry (CFFPR) data to quantify the extent to which persons with CF received the recommended components of the care model in 2019 versus 2020. A risk factor analysis was implemented to identify patient characteristics associated with attaining the recommended CF care and use of any telehealth using multivariable logistic regression.
A total of 28,132 CFFPR participants were included in the study. The proportion of individuals meeting the recommendations for CF care was lower in 2020 for every indicator, and lower in adults compared to children. In adults, demographic, socioeconomic and CF-related disease covariates were significantly associated with both achieving an aggregate level of care and use of telehealth. In the pediatric population, minority race/ethnicity and markers of lower socioeconomic status were associated with a lower odds of telehealth use. In all analyses, having received the recommended level of care in 2019 was associated with a higher odds of both reported telehealth use and achieving the recommended elements of the CF care model in 2020.
Fewer participants met recommendations for care in 2020 despite widespread use of telehealth, and use of telehealth did not equate to adherence to all aspects of CF care.
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- Clinical Practice Guidelines on G, et al. Evidence-based practice recommendations for nutrition-related management of children and adults with cystic fibrosis and pancreatic insufficiency: results of a systematic review.J Am Diet Assoc. 2008; 108: 832-839
- Cystic fibrosis pulmonary guidelines. Chronic medications for maintenance of lung health.Am J Respir Crit Care Med. 2013; 187: 680-689
- Cystic fibrosis pulmonary guidelines: airway clearance therapies.Respir Care. 2009; 54: 522-537
- Guide to bone health and disease in cystic fibrosis.J Clin Endocrinol Metab. 2005; 90: 1888-1896
- Clinical care guidelines for cystic fibrosis-related diabetes: a position statement of the American diabetes association and a clinical practice guideline of the cystic fibrosis foundation, endorsed by the pediatric endocrine society.Diabetes Care. 2010; 33: 2697-2708
- International committee on mental health in cystic fibrosis: cystic fibrosis foundation and European cystic fibrosis society consensus statements for screening and treating depression and anxiety.Thorax. 2016; 71: 26-34
- Recommendations for management of liver and biliary tract disease in cystic fibrosis. Cystic fibrosis foundation hepatobiliary disease consensus group.J Pediatr Gastroenterol Nutr. 1999; 28: S1-13
- Improvements in cystic fibrosis quarterly visits, lung function tests, and respiratory cultures.Pediatrics. 2015; 136: e1611-e1616
- Changes in care during the COVID-19 pandemic for people with cystic fibrosis. Annals of the.American Thoracic Society, 2022
- Trends in outpatient care delivery and telemedicine during the COVID-19 pandemic in the US.JAMA Intern Med. 2021; 181: 388-391
- Cystic fibrosis learning network telehealth innovation lab during the COVID-19 pandemic: a success QI story for interdisciplinary care and agenda setting.BMJ Open Qual. 2022; 11
- Emerging alternatives to conventional clinic visits in the era of COVID-19: adoption of telehealth at VCU adult cystic fibrosis center.Int J Gen Med. 2020; 13: 1175-1186
- "Can you see my screen?" Addressing racial and ethnic disparities in telehealth.Curr Cardiovasc Risk Rep. 2021; 15: 23
- The cystic fibrosis foundation patient registry. Design and methods of a national observational disease registry.Ann Am Thorac Soc. 2016; 13: 1014-1015
- Cystic Fibrosis Foundation Patient Registry 2020 Annual Data Report.2021
- Financial impacts of the COVID-19 pandemic on cystic fibrosis care: lessons for the future.J Cystic Fibrosis. 2021; 20: 16-20
- Impact of COVID-19 on mental health: effects on screening, care delivery, and people with cystic fibrosis.J Cystic Fibrosis. 2021; 20: 31-38
- Home spirometry utilisation in telemedicine clinic for cystic fibrosis care during COVID-19 pandemic: a quality improvement process.BMJ Open Qual. 2021; 10
- Detection of bacterial pathogens using home oropharyngeal swab collection in children with cystic fibrosis.Pediatr Pulmonol. 2021; 56: 2043-2047
- Telehealth use in cystic fibrosis during COVID-19: association with race, ethnicity, and socioeconomic factors.J Cystic Fibrosis. 2021; 20: 49-54
- National-level disparities in internet access among low-income and black and hispanic youth: current population survey.J Med Internet Res. 2021; 23: e27723
- The effect of broadband access on electronic patient engagement activities: assessment of urban-rural differences.J Rural Health. 2021;
- Best practices for virtual engagement of patient-centered outcomes research teams during and after the COVID-19 pandemic: qualitative study.J Particip Med. 2021; 13: e24966
- Evaluating barriers to and promoters of telehealth during the COVID-19 pandemic at U.S. cystic fibrosis programs.J Cystic Fibrosis. 2021; 20: 9-13
- Real-world outcomes in cystic fibrosis telemedicine clinical care in a time of a global pandemic.Chest. 2022; 161: 1167-1179
- Psychological interventions during COVID pandemic: telehealth for individuals with cystic fibrosis and caregivers.Pediatr Pulmonol. 2021; 56: 1976-1984
- Mental health screening of patients with cystic fibrosis through telehealth during COVID-19: evaluation of feasibility and process adoption.Fam Syst Health. 2022;
- Home monitoring of patients with cystic fibrosis to identify and treat acute pulmonary exacerbations. eICE study results.Am J Respir Crit Care Med. 2017; 196: 1144-1151
Published online: December 14, 2022
Accepted: December 6, 2022
Received in revised form: November 8, 2022
Received: August 9, 2022
Publication stageIn Press Corrected Proof
© 2022 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.