Education, employment, and income among people living with cystic fibrosis across three decades - A matched cohort study using Danish health registries

Camilla Bjørn Jensen*, Kristoffer Jarlov Jensen, Tacjana Pressler, Terese L Katzenstein, Marianne Skov, Tavs Qvist, Mette Frahm Olsen, Majbritt Jeppesen, Søren Jensen-Fangel, Hanne Vebert Olesen, Simon Bertram Reuter, Hans Kristian Råket Pedersen, Joanna Nan Wang, Steven Michalopoulos, Lisa McGarry, Heike Wöhling, Janne Petersen, Espen Jimenez-Solem, TransformCF study group

*Corresponding author for this work


BACKGROUND: Past and ongoing advancements in cystic fibrosis (CF) care warrant long-term analysis of the societal impact of the condition. This study aims to evaluate changes in key socioeconomic factors across three decades among people living with CF (pwCF), compared with both the general population and an early-onset chronic disease population.

METHODS: This nationwide, registry-based, matched cohort study included all pwCF ≥ 18 years in Denmark in the years 1990, 2000, 2010, and 2018. Each person living with CF was matched to five individuals in the general population and five individuals living with type 1 diabetes or juvenile arthritis based on age, sex, and municipality.

RESULTS: The Danish adult CF population increased nearly fourfold from 88 in 1990 to 331 in 2018, and mean age increased by ten years. The educational level of pwCF was similar to the two comparator cohorts, while pwCF were less often in employment and more often permanently outside the labor force. Personal and household income levels of the CF cohort were higher than those of the comparator cohorts.

CONCLUSIONS: The disadvantage in employment for pwCF remained, but, over time, the societal profiles of the one-year CF cohorts increasingly converged with those of the comparator cohorts, indicative of improved clinical management, extended life expectancy, and the supportive role of the Danish welfare system in reducing health inequalities. Further research should be done to evaluate the effects of the newly introduced modulator therapies on employment, considering the broader societal impact and impact on quality of life.

Original languageEnglish
JournalJournal of cystic fibrosis : official journal of the European Cystic Fibrosis Society
Publication statusE-pub ahead of print - 14 Mar 2024


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