(372) Increasing interest in post-secondary education in the CF population

Thursday, November 3, 2022

12:00 PM – 12:40 PM ET

Presenting Author(s)

Erin E. Fleming, BA (she/her/hers)

Senior Specialist
Cystic Fibrosis Foundation, Bethesda, MD, USA
Denver, Colorado, United States

Co-Author(s)

AS

Aaron Stocks

Operations Manager
Cystic Fibrosis Foundation
Bethesda, Maryland, United States
AK

Azi S. Kaider, B.S., CPhT, CCRS

Director, Patient Access Programs
Cystic Fibrosis Foundation
Bethesda, Maryland, United States

Background: Planning for college and post-secondary education has historically been a challenge for people living with cystic fibrosis (CF) due to a shortened life expectancy and the high cost of CF treatments. According to the CF Foundation Patient Registry, the median age of death was 32 in 2019 for people with CF (PwCF) in the United States. [1] Those who are healthy enough to plan for post-secondary education typically need financial assistance to offset the cost of tuition. This need has led to many PwCF contacting CF Foundation Compass, a free personalized case management service that provides information and resource referrals, for assistance with education-related expenses. Over the course of the pandemic, Compass observed a spike in interest of people seeking financial assistance and other resources to explore further education. We sought to better understand the increase in education requests from 2019 to 2021.

Methods: Compass data from January 1^st, 2019, through December 31^st, 2021, was reviewed. Compass categorizes all requests for assistance as inquiries, and we reviewed data for all cases with inquiries categorized as education. These include requests for scholarships, financial aid, and vocational rehabilitation. Compass also collects caller demographics such as age, household size, and household income and this information was reviewed for all education inquiries during the three-year period. We do not typically ask why callers are requesting financial assistance.

Results: There was an increase in requests for financial assistance for education in 2020 and 2021. Compass received 98 scholarship requests in 2019, 140 in 2020, and 238 in 2021. The average age of PwCF requesting financial assistance with education was 24 all three years. In 2019, one PwCF with an income of $100,000 or more requested financial assistance with education, in 2020, five PwCF did, and in 2021, 13 PwCF did.

Conclusions: The number of education requests Compass receives has increased every year since 2019. It is also important to note the average age of PwCF was 24, which is considered a non-traditional student by the National Center for Education Statistics. [2] There was also an increase in callers with high household incomes requesting financial assistance with education expenses. The approval of elexacaftor/tezacaftor/ivacaftor (Trikafta) in 2019 may have contributed to the increase in requests each year, as PwCF eligible for and taking this medication are potentially experiencing improved health outcomes and able to focus on furthering their educations. It can also be inferred that the COVID-19 pandemic may have contributed, as less people were able to work outside the home and may have elected to further their education as a result. Financial hardships due to the pandemic may also explain the increase in requests for financial assistance, even for those with high household incomes. Our results show a continued increase in requests each year. In the future, we are interested in identifying/exploring the cause of this increase through survey or conversations with those seeing education assistance through Compass. We will continue to follow the data to see if the increase continues as the Covid-19 pandemic ends.

Acknowledgements:

References: [1] 2019 Cystic Fibrosis Foundation Patient Registry Highlights Bethesda, Maryland

[2] Horn, L., Carrol, C. “Trends in Enrollment from 1986 to 1992 and Persistence and Attainment Among 1989-90 Beginning Postsecondary Students” (1996) https://nces.ed.gov/pubs/97578.pdf