Socioeconomic Barriers for Young Adults with Congenital Heart Disease in Accessing Cardiac Care in a Regional Reference Center

Objective

This study aimed to ascertain socioeconomic factors affecting access to adult congenital cardiac services and adult congenital cardiac surgical services in Ontario.

Design and method

Hospital records identified 2232 patients with complex congenital heart disease referred from the regional pediatric cardiac surgery center to the regional adult congenital cardiac disease (ACHD) center 2004-2016 specifically for complex ACHD, with follow up of 3 years to the end of 2019. The ACHD center identified 259 congenital cardiac surgery patients who turned 18 between 2004-2016 coincident with the transfer cohort and had surgery between 2004 and 2019. Of the 259, 106 were part of the referral cohort and the remainder were followed elsewhere in the country or were new Canadians.

Environics data identified socioeconomic variables associated with postal address at time of transfer. Failed transfer (FT) was defined as no visit to the ACHD center 3 years after graduation from the pediatric center, lost to follow-up (LTFU) was defined as a gap in care of 5 years or more. Navigation of a cardiac surgical (CS) pathway was defined as having cardiac surgery during the study period of 2004-2019 allowing for a 3 year follow up from the end 2016 as per the definition of transfer.

Continuous variables were summarized as medians and interquartile ranges. Between-group comparisons were evaluated using Wilcoxon rank-sum tests for continuous and Fisher's exact tests for dichotomous and polytomous variables.

Results and conclusions

FT occurred in 11% and LTFU in 26%. There was a 2% overlap between the FT and LTFU groups.

FT was associated with an address with no car access (p=.016), being employed (p=.019), working from home (p=.017), living closer to, or in the same city as the ACHD center (p=.002, .001)

Factors associated with LTFU were an address associated with lower income (p =.001), higher unemployment (p=.018), lower high school graduation (p=.022), no car access (p=.003).

Factors associated with cardiac surgery included an address associated with higher household income (p<.001), high school certificate, college degree, bachelor's degree or diploma, and university degree higher than a bachelors (p=.005, .006, .004, .038), access to a car for travel to work (p<.001), Canadian citizenship (p=.041) and French or English as the primary language in the home (p=.038)

Conclusions

Young adults with adverse socioeconomic factors face barriers in transferring from child to ACHD services, and to maintaining care in adulthood. Patients that have navigated cardiac surgery live in wealthier neighbourhoods with higher education and are more likely to be citizens with a predominance of one of the two official languages.