Developing communication tools for CF patients during a pandemic

ABSTRACT

Background: At the onset of the COVID-19 pandemic, the CF Center at Cincinnati Children's Hospital Medical Center (CCHMC) was forced to shutter operations as usual and find new ways to communicate with the 235 pediatric patients and their families. In-person appointments and direct communication were decreased to minimize possible exposure to COVID-19. Information had to be shared in varying ways to answer questions for fearful patients and caregivers, as well as provide tools to empower them at home. Method: A virtual town hall was held in April 2020 that featured three providers who discussed information about COVID-19, how it affected both the inpatient and outpatient settings for our patients with CF, methods to cope with the stresses of living through a pandemic, followed by a Q&A with the webinar participants. A second virtual town hall was held in May to continue communication with patients and families regarding the effects of COVID-19 on current practices at CCHMC. A link to a recording of the town halls was emailed to all families and recordings and pertinent information were also posted on the CCHMC COVID-19 website. Another town hall is scheduled for June 2, 2020, and the CF Center anticipates holding these at least once a month moving forward. Just prior to the pandemic outbreak, the CF Center at CCHMC created a Pulmonary Exacerbation Scoring (PES) tool which enabled patients and caregivers to provide an objective score to signs and symptoms of a CF exacerbation. This tool is individualized for each patient, contains a list of each person's home maintenance respiratory medications, and helps families identify their child's baseline to know when symptoms increase. The PES tool was emailed to each patient/caregiver to empower and encourage them to continue care at home during this pandemic. A video, created by a parent partner, was included in the email to explain how to utilize the PES tool. Two social workers initiated patient-family communication by sending out an email of resources (CF-specific, med/food delivery, rent/mortgage/ food/utilities aid, etc) available to our patients in our tri-state region. Following this, several CF care members created and distributed informative videos concerning their respective fields. Our school liaison specialist offered tips to set up the caregivers for success with remote learning. The psychologist proffered two videos one video was a COVID-19 specific video to address fear and anxiety, while the second video addressed mental health resources offered through CCHMC. Our physical therapist presented different ways patients and families can engage in activities while also under quarantine. Outcome: To date there have been 236 views of all recordings distributed. Families prior to the CF town hall webinar expressed concerns regarding COVID-19 and its effects on operations, but once the town hall was complete, felt that their concerns had been addressed. Verbatim feedback after the town halls included “Great job everyone! This was really great! Dr. Chris did such a great job answering questions that I have nothing else!” and “This is truly an unbelievable time for all of us and all of you at Cincinnati Children's. I fully trust all of your decisions.”.