Evaluating barriers to and promotors of telehealth during the COVID-19 pandemic at U.S. cystic fibrosis programs (Commentary)

1. Commentary

Gifford et al. evaluated factors that promoted or impeded the use of telehealth programs (TH) in the United States at two points during the COVID-19 pandemic, July 29 to September 18, 2020 and again between April 19 to May 19, 2021. As great testimony to the networks, partnerships, team work, leadership and camaraderie overseen by the Cystic Fibrosis Foundation they report on findings surveyed from 281 CF healthcare programs. The pandemic forced many of these centers to pivot and, in some instances, scramble towards remote provision of health care. Many of the experiences described in the paper are shared widely, including by CF healthcare providers and stakeholders in Australia. Although as yet no such systematic data are available in Australia as equivalent national surveys remain in progress, interesting comparisons and experiences from Australia may still be considered insightful in the context of provision of TH to people with CF.

TH services in Australia were reasonably well-developed even prior to the onset of the COVID-19 pandemic, encouraged by the federal government as a means of improving access to healthcare in remote and regional areas [1]. People with CF living in such areas had gained experience with, and were utilizing, TH for such purposes and funding was reimbursed to health care providers from the federal government. In our own service we had pre-existing infrastructure for TH with experience of running ‘virtual’ multi-disciplinary clinics and consultations to patients with the most difficult access to the CF service. The hospital employed a TH officer to oversee the service, had upgraded computer software and webcams expressly for TH and introduced specific TH platforms – commonly available platforms for videoconferencing such as Zoom, FaceTime, Skype etc. were not viewed as acceptable, primarily due to security concerns, unless in emergency situations. Instead, a platform recommended by the federal government had been implemented that had been developed by HealthDirect Australia, a government-funded not-for-profit organization aiming to improve the health of Australians by providing better access to health care [2]. A small study of adults with CF living in remote parts of Western Australia was encouraging as uptake of TH was associated with increased clinic attendance and health care utilization and had high satisfaction among patients [3]. We piloted the use of TH spirometry and demonstrated that this was feasible, popular with families, and saved considerable travelling time for the participants [4].

Although the pandemic played out very differently in Australia compared with the United States with the country experiencing comparatively few cases and little mortality (< 1000 deaths due to COVID-19 at the time of writing), at its outset, due to the perceived risks associated with transmission of infection with SARS-CoV-2 in hospitals, and the aim of preserving in-patient and face-to-face services for management of patients infected with the SARS-CoV-2 virus, services in Australia also pivoted very rapidly towards further adoption of TH. Initially, in our service and others around Australia all appointments were rescheduled to TH. This was facilitated by government reimbursement being extended to include those residing in metropolitan areas. We retained a single, weekly clinic available for acute problems requiring face-to-face consultation. TH clinics were conducted with both the CF care team and the patient based in their homes. The proportion of consultations being conducted using TH in the US are considerably lower than in Australia during this time, and, especially in the state of Victoria, which experienced the greatest number of cases of COVID-19, where TH was used for 95% of CF consultations at the outset of the pandemic (70% of all consultations in the hospital were conducted via TH) and is still utilized for at least 43% of CF consultations currently. This decrease in utilization that occurred as appointments were increasingly assigned face-to-face, were due to the changes in perceived community risk of spread of SARS-CoV-2 rather than the progress in COVID-19 immunization as suggested by Gifford et al. By the time of the second survey undertaken by them in May 2021, vaccination in Australia was very much behind schedule with lack of available supply of the preferred (Pfizer-BioNtech) vaccine. Therefore, only 12.4% had received a dose of the vaccine compared with 32.0% in the US.

Although considerable experience of TH existed in Australia, iterative service improvements occurred during the pandemic [5] addressing barriers around obtaining pulmonary function testing, microbiological samples, anthropometric measurements and delivery of medications. A local satisfaction survey in a pediatric setting identified that nearly all respondents (97.5%) reported being able to speak to all the clinicians they wanted to during a consultation and that respondents were predominantly satisfied (46.8%), or very satisfied (44.3%) with TH clinics. Just over half (51.7%) of patients aged 6 years or older had access to a home spirometer (Easy on-PC[1], [2], [3], [4], [5], [6], [7], NDD Medical Technologies, Zurich Switzerland). The majority were able to obtain an airway sample at home (88.6%). Regarding anthropometrics, 92.4% were able to weigh their child and 88.6% were able to measure their height. TH is currently being used for clinic consultations, education, research discussion, annual review discussions, physical therapy technique training, mental health screening and well-being interactions, additional pulmonary function assessments and acute clinical consultation for potential exacerbations. In terms of the future role of TH clinics, the majority (87.3%) of respondents wanted to consider TH clinics beyond the COVID-19 pandemic [6]. The main concern expressed by stakeholders was that there was no physical examination. Other concerns were that there was less engagement with the CF care team, no staff-collected airway sample and concerns about privacy. A significant advantage identified was the decreased cross-infection risk, especially in the context of increasing detections of infection with non-tuberculous mycobacteria in our service [6].

Lack of internet access was the most commonly identified barrier by Gifford et al. In Australia internet coverage for households with children under 15-years-old is nearly universal whereas for adults in remote areas this falls to 77% [7]. Facilitation of internet access for those lacking access needs consideration as individuals living in such remote areas are often so distant from the CF care centre that they may have the most to gain through TH. With reference to the other barriers to TH identified by Gifford et al. health care coverage in Australia is free to those with CF and so availability of health insurance is not a barrier. Although potential for language barriers exist this is not due to lack of interpreters. For example, in our service translators for 11 major languages are directly available, with phone access to interpreters for a further 119 languages also available to join TH consultations. Interpreting services have been much more commonly used for non-CF TH clinics than for CF.

Gifford et al. reported less utilisation of TH by pediatric versus adult services. Guidelines for infants and younger children recommend increased frequency of visits. Our experience is that TH permits even more frequent contact in the first few weeks after diagnosis for education and surveillance and avoids the incredible stress and effort of young families having to load up their transport with all the paraphernalia required to get to the care centre at a specified time for a face-to-face consultation. It also diminishes the often-expressed anxiety about a young child contacting infections from the hospital environment. Health literacy, privacy concerns, job loss / insecurity and housing insecurity are considerable barriers to TH and will certainly need to be addressed to enhance TH services, and, indeed, improve care for people with CF irrespective of the consultation modality used.

As we embrace the future era of highly-effective CFTR modulators we can anticipate that the 2-3 monthly paradigm of assessment will have diminished utility. A healthier era means that more subtle signs of change or deterioration from baseline will need to be detected. Such monitoring, if possible, will need to take place more frequently and in the homes of our patients using new technologies with incorporation of TH [5]. Sharing our experiences, working together on quality improvement activities and utilizing our registry data, as suggested by Gifford et al. will help us mitigate the barriers and adapt to the changing needs of people with CF.

Declaration of Competing Interest

None