CF Patients and Families Favoring Telehealth as Option for Care, Survey Finds

CF Patients and Families Favoring Telehealth as Option for Care, Survey Finds
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People with cystic fibrosis (CF) and their families are largely satisfied with the convenience and quality of care received using telehealth models initiated during the COVID-19 pandemic, a survey study from Australia finds.

The study, “Patient and Family Perspectives Regarding the Use of Telehealth For Cystic Fibrosis Care,” was published in the journal Pediatric Pulmonology.

Typically, CF patients have regular in-person visits with a specialized care team. While beneficial for overall health outcomes, this care model can be financially burdensome and time-consuming, and can create a barrier to care for those who need to travel significant distances to reach a specialized CF center. Frequent in-person appointments can also increase the risk of cross-infection, an even greater concern in light of the ongoing COVID-19 pandemic.

Telehealth offers care options for patients with CF that overcome many of the inconveniences and safety concerns surrounding in-person appointments. However, the level of monitoring required in routine CF patient care may make it an impractical option for some patients and healthcare providers. As the pandemic has forced many clinics to transition to telehealth models, questions remain about their feasibility and quality.

Researchers at Royal Children’s Hospital (RCH) in Melbourne assessed satisfaction with care given via remote connections (telehealth), conducting a survey of patients and families using the hospital’s CF clinics. They also evaluated telehealth-related abstracts presented at the 2020 North American Cystic Fibrosis Conference (NACFC).

“Collectively, these studies provide a unique opportunity to assess what people with CF and their families think about telehealth and whether they would like it to continue into the future,” the researchers wrote.

In response to COVID-19 safety measures, RCH implemented a telehealth model that involves web-based video appointments with multiple members of a multidisciplinary care team, and kits with written instructions and video demonstrations sent to patients prior to appointments. These kits are used to measure weight and height, and evaluate lung health using a home spirometer under the supervision of a respiratory scientist.

Electronic surveys were conducted three and a half months after the clinics transitioned to the telehealth model.

The survey was distributed to 205 patients and families, with a response rate of 38.5% (79 out of 205). Patients median age was 10 years old (range, 1–19).

Overall, respondents expressed satisfaction with their telehealth appointment, with the majority being satisfied (46.8%, 37 out of 79) or very satisfied (44.3%, 35 out of 79), and 7.6% (six out of 79) being neutral. Only one respondent (1.3%) reported being very dissatisfied. In total, 87.3% of respondents said they would consider continuing with telehealth appointments after the pandemic.

Of the 79 survey respondents, 77 (97.5%) reported being able to speak with their doctors, and 78 (98.7%) had all of their questions answered satisfactorily.

Most patients, 72 (92.4%),  were able to measure their children’s weight, and 70 (88.6%) measured the children’s height. Slightly more than half of the patients ages 6 and older (51.7%) had a home spirometer, 88.6% of them successfully collected an airway sample.

Among the potential concerns related to telehealth, 20 (25.3%) respondents identified the lack of a physical exam, eight (10.1%) mentioned the lack of a lung function assessment, five (6.3%) pointed to less engagement with the CF care team, and four (5.1%) would have preferred health specialists collecting an airway sample. A need to travel to the hospital despite a telehealth exam and privacy concerns were each mentioned by one patient.

Ten abstracts presented at NACFC addressed patient and family levels of satisfaction with online telehealth. Eight involved clinics based in the U.S., and two were in the U.K. 

Seven focused on adult patient satisfaction, with between 20 and 90 patients surveyed per study and with response rates ranging from 33.3% to 63.3%. Consistent with previous survey results, respondents across studies reported satisfaction with telehealth and mentioned an equivalent quality of care between in-person and telehealth appointments. In one study, 92% of respondents felt telehealth should be used for at least some clinic visits in the future.

Among the benefits of telehealth identified in these surveys were a lack of travel time to the clinic, lesser time away from work, and a reduced risk of cross-infection. Respondents listed a lack of lung function assessment, airway sample collection, and physical examination as limitations of telehealth appointments.

In the three studies assessing pediatric patients, with sample sizes ranging from 26 to 95, satisfaction was similarly high, and similar benefits and limitations were identified.

Overall, the RCH survey and NACFC abstract reviews offer support for telehealth use among CF patients and their families. 

“What these studies demonstrate is the overwhelming support of people with CF and their families for telehealth. As such, these studies provide a mandate for incorporating telehealth clinics into CF care beyond the COVID-19 pandemic,” the investigators wrote, adding that “future work will need to assess the effect of telehealth clinics on CF health outcomes.”

This study is limited by potential selection bias related to low survey response rates and data collection during the COVID-19 pandemic, which may affect patient opinions of telehealth options.

Aisha Abdullah received a B.S. in biology from the University of Houston and a Ph.D. in neuroscience from Weill Cornell Medical College, where she studied the role of microRNA in embryonic and early postnatal brain development. Since finishing graduate school, she has worked as a science communicator making science accessible to broad audiences.
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Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.

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Aisha Abdullah received a B.S. in biology from the University of Houston and a Ph.D. in neuroscience from Weill Cornell Medical College, where she studied the role of microRNA in embryonic and early postnatal brain development. Since finishing graduate school, she has worked as a science communicator making science accessible to broad audiences.
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