Perspectives of People with CF and Caregivers Regarding Medication Access, Self-Reported Adherence, and Telehealth in CF Care During the COVID-19 Pandemic

Abstract

Background: In the context of an international pandemic, social distancing and quarantine have unknown and possibly substantial effects on medication and care delivery. In this study, adult persons with CF (PwCF) and CF caregivers (CG) were surveyed regarding changes in medication access and adherence, as well as telehealth care before and during the COVID-19 pandemic. Methods: The electronic de-identified survey was disseminated to CFF Community Voice and CysticLife communities from 6/24/2020 to 7/15/2020. This survey included PwCF and CG ages 18 years and older, within and outside of the U.S.. The survey items included multiple choice and Likert scale questions focused on perceptions of medication access and use before and during the pandemic; telehealth service availability and use; and demographics. Data were analyzed using descriptive statistics. Results: The 342 respondents who attempted the survey included 57.6% were PwCF and 42.4% were CGs. Seventy-five percent of CGs cared for a PwCF under 18 years old. Forty US states were represented and 3% were from outside the US. Reported access to 60 or 90-day medication supply was not different before and during the pandemic. Most (90%) shared availability of at least one service encouraging minimal/no contact (e.g., drive thru, delivery) at their local pharmacy; while only 40.5% observed in-pharmacy precautions (e.g., limited people inside, spacing, special hours). When asked about medication use, 8.6% reported taking less of their medications while 33.6% were taking medications more regularly. Of those taking less, dornase alfa (25%), hypertonic saline (13.5%), and inhaled antibiotics (19.2%) were most common. Similarly, of those taking them more regularly, dornase alfa (19.3%) and hypertonic saline (18.5%) in addition to pancreatic enzymes (19.3%) were most common. Top reasons for taking medication less often included concern for possible medication shortages (11.1%) and cost (33.3%). Worry about contracting COVID-19 (26.3%) and having more time from “safe at home” orders (53.4%) were common reasons for respondents taking medications more

regularly. For laboratory blood draws and respiratory cultures, 40% and 65% of respondents shared that they were postponed, respectively. Most felt that video visits and phone visits were convenient, effective, and sufficient in place of in-person visits. Conclusion: The COVID-19 pandemic had wide reaching effects on CF care, with positive changes in available pharmacy medication pickup and delivery options. A small number of participants reduced their medication use due to worries about medication shortages and being able to pay for medications. A larger percentage made efforts to improve adherence due to worries about COVID. Participants appreciated the telehealth visits while laboratory tests and respiratory cultures were postponed. Although this pandemic is far from over, our results offer a new lens from which to view the potential opportunities and challenges in CF care for PwCF and their caregivers.