Telemedicine in cystic fibrosis

Abstract

Cystic Fibrosis (CF) requires lifetime multidisciplinary care to manage both pulmonary and extra pulmonary manifestations. The median age of survival for people with CF is rising and the number of adults with CF is expected to increase dramatically over the coming years. People with CF have better outcomes when managed in specialty centers, however access can be limited. Telemedicine and technology-based care solutions may help to overcome barriers to availability and improve access. This review outlines the use of telehealth for CF management. Telehealth has been utilized for CF across a broad variety of indications, even prior to the COVID-19 pandemic, and in general has been well accepted by patients and providers. There are a paucity of data, however, related to health outcomes, and the healthcare utilization specific to CF and its related comorbidities. Future studies are needed to address the questions of health outcomes, cost, burdens of telehealth and barriers to implementation.

Telehealth in Cystic Fibrosis. A systematic review incorporating a novel scoring system and expert weighting to identify a ‘top 10 manuscripts’ to inform future best practices implementation

“…In 2021 Desimone et al . conducted a review of telehealth for CF management, and similar to the other reviews, found that while there are many exemplars of telehealth being used within CF care for a variety of indications, there continues to be a lack of data related to health outcomes and the use of telehealth for CF related co-morbidities [9] .…”

“…This can be seen in the US where the Cystic Fibrosis Learning Network established a TeleHealth Innovation Lab (TH ILab) to support transition from a traditional care model to one that included telehealth [29] . Furthermore, these working groups can provide guidance on other outstanding queries surrounding CF telehealth decision making such as cost, patient/MDT burdens, and barriers to availability [9] .…”

“…Despite these findings, CF centres use telehealth in varying capacities, and report specific use cases for telehealth within CF care, such as psychology [10] , exercise [11] , treatment adherence [12] , or remote clinics [13] . Some of the noted benefits of telehealth within CF care include improved access to healthcare, reduced travel costs, reduced time away from work/school, improved patient engagement/adherence, reduced infection risk, and a feasible solution for the growing number of CF patients [9] . However, the role of telehealth within the current care model has not been fully established and lacks guidelines or best practices.…”

“…However, the role of telehealth within the current care model has not been fully established and lacks guidelines or best practices. Barriers/disadvantages to its use have also been identified, including lack of a physical exam, security/data transfer issues, necessity for a stable internet connection, a lack of telehealth education, and lack of dedicated support services [9] . This scattered adoption of telehealth within CF changed rapidly with the outbreak of the Covid-19 pandemic.…”

Comparison of Bioelectrical Impedance Analysis with DXA in Adolescents with Cystic Fibrosis before and after a Resistance Training Intervention

“…Furthermore, DXA scanners are expensive, require technical expertise to operate, and are not available in many clinical centers. Scheduling additional visits with patients for the purpose of body composition assessment may not be feasible due to long travel distances to their clinical care centers or to a facility with a DXA scanner [ 24 ]. An additional concern with DXA is the radiation exposure which, although low-dose, similar to a standard X-ray, and generally considered safe, may pose future health risks with repeated doses [ 25 , 26 ].…”