(98) Improving Quarterly Out-Patient Pediatric Cystic Fibrosis (CF) Clinic Visits

Background: The CF Foundation guidelines recommended a minimum of 4 visits per year for stable patients with CF. According to our 2018 CF Center annual report, 72.9% of the center’s pediatric population was seen the recommended 4 times per year. The national average was at 72.2% and the top 10 centers’ average was >80%. With the rapid change of the pandemic and the introduction of highly effective modulator therapy (HEMT), the pediatric care team feared that patients would not come to their routine quarterly visits. With close monitoring, we felt that at a minimum, a goal of 78% (a 5% improvement from 2018) could be attained by the end of 2021.

Methods: The pediatric patients from our center entered in PortCF were included in this study cohort. Patients who transferred into or transitioned out of the center during the study period (January 2019-December 2021) were excluded. The data and program coordinators tracked the number of patient’s quarterly visits on a spreadsheet. A tracking spreadsheet was compiled and highlighted the number of patients who needed to be scheduled to meet the recommended four times per year visits. The clinic department assistant made at least two attempts, one week apart, to call and schedule the patient. If an appointment was scheduled, we tracked to ensure the appointment was kept. If the patient canceled the appointment, they remained on the contact list. The Plan-Study-Do-Act (PDSA) cycles were tracked annually.

PDSA 1 (2019): If no reply and the patient had not been seen in 6 months, then a certified letter was sent encouraging the patient to contact the center. Another one was mailed out at the one year mark, if the patient still had not contacted the center. The center adopted this method, as the quarterly visits for the year improved.

PDSA 2 (2020): Due to the pandemic, the center converted many of the in-person clinics to telehealth. These telehealth visits were also included as an encounter that counted as a quarterly visit. The center also adopted this method and continued to offer telehealth options.

PDSA 3 (2021): The center included a HEMT agreement form for all the eligible patients. Both parents and the care team signed the agreement form together, which included a clause that the patients needed to continue to come to their quarterly appointments.

Results: The study used the 2018 data as the baseline. Each year a new PDSA was introduced and tracked. By the end of 2021, the average quarterly visits improved to 79.6%, with an improvement of 6.7% since 2018. The center exceeded the goal of 78% by 1.6%. However, the increase was not statistically significant since the population size was small.



2018 (baseline): 72.9%

2019 (reminder letters): 74.6%

2020 (inclusion of telehealth visits): 74.8%

2021 (modulator agreement form): 79.6%

Conclusions: The processes identified above have improved the quarterly visit metrics for the Pediatric CF Program. Despite the challenges of a pandemic and the introduction of HEMT, we surpassed our goal. Keys to this success included collaboration and the accountability of the patients, parents, and care team. The center has standardized the reminder letters and the HEMT agreement form. Next steps will include identifying the optimal frequency for collecting data reports.

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