Odds for job lock, curtailed employment elevated in families of kids with cystic fibrosis
Key takeaways:
- Around 16% of families of children with CF reported job lock in the past 12 months vs. 6.6% of families of children without CF.
- This pattern was also seen for curtailed employment and problems paying for care.
Having a child with vs. without cystic fibrosis heightened the odds for job lock and curtailed employment among parents/caregivers, according to a research letter published in JAMA Pediatrics.
“U.S. health care coverage is typically tied to employment, sometimes causing job lock, which deters people from changing employment because they need to maintain coverage,” Lenore S. Azaroff, MD, ScD, of the Edward M. Kennedy Community Health Center, and colleagues wrote.
In a cross-sectional study, Azaroff and colleagues evaluated 175 parents/caregivers of children with cystic fibrosis (CF; median age, 9 years; 55.4% male) from the 2016 to 2022 National Survey of Children’s Health to determine the link between job lock and care access for their children vs. 278,654 parents/caregivers of children without CF (median age, 9 years; 51.1% male).
Between the CF cohort and the non-CF cohort, researchers found significant differences in three characteristics: highest education attainment (less than high school, 30% vs. 9.2%; P < .001), family income (0% to 99% federal poverty level, 46.9% vs. 19.4%; P = .01) and number of caregivers in household (only one, 40.1% vs. 15.7%; P < .001).
In terms of outcomes related to employment, the proportion of parents/caregivers of children with CF who reported job lock in the past 12 months was 16.5%, and this was significantly higher than the 6.6% of parents/caregivers of children without CF who reported this outcome (P = .006).
Following a similar pattern, the CF vs. non-CF cohort had a larger proportion of parents/caregivers reporting “curtailed employment due to a child’s health” (17.8% vs. 6.6%; P = .001), according to the study.
Switching to financial and care access outcomes, researchers observed that 21.9% of parents/caregivers of children with CF faced problems paying for care in the past 12 months, whereas only 9.6% of parents/caregivers of children without CF faced this problem (P = .007).
Further, 18.4% of parents/caregivers in the CF cohort reported that they were unable to receive needed care for their child, whereas fewer parents/caregivers in the non-CF cohort had this issue (3.3%; P < .001).
Use of a model adjusted for several variables (child’s age, sex, race and ethnicity, insurance coverage, etc) revealed significant heightened odds among parents/caregivers of children with vs. without CF for job lock (adjusted OR = 3.43; 95% CI, 1.49-7.89; P = .004) and curtailed employment (aOR = 2.71; 95% CI, 1.27-5.75; P = .01) reports, according to the study.
In alignment with the above finding on problems paying for care, the odds for this issue were higher in the CF vs. non-CF cohort (aOR = 3.2; 95% CI, 1.4-7.35; P = .006).
Lastly, researchers found elevated odds for spending at least $1,000 on child’s medical care among parents/caregivers of children with vs. without CF (aOR = 2.25; 95% CI, 1.28-3.96; P = .005).
“Our findings suggest that insurance concerns may contribute to parents of children with CF experiencing job lock, which may obstruct their movement to higher paying or more flexible employment that could alleviate financial adversity and improve access to care for their child,” Azaroff and colleagues wrote.
Perspective
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Managing CF requires a lifetime of access to specialized care and many types of medicines, necessitating high health care costs. People with CF and their families must be able to afford adequate insurance coverage, care and everyday life needs. This study highlights how employment impacts each of those areas, including what type of insurance coverage is available, how much someone pays for their care and how much money is left over to pay for daily needs such as transportation or utilities.
As people with CF navigate these related issues, many make tradeoffs that can be directly related to access to the care they need — such as delaying care due to cost — or to broader life decisions around major purchases, pursuing education, building careers and more.
The results of this study echo findings from a 2019 CF Foundation-supported survey of more than 1,850 people with CF and caregivers, in which 71% indicated paying for health care caused financial problems and 65% reported concerns that insurance status influenced life plans such as switching jobs, getting married or moving to another state.
The same jobs that provide adequate insurance coverage, however, may not pay enough to cover other basic life needs — 64% of people with CF reported experiencing at least one financial burden, including debt issues, housing issues and/or food insecurity, according to a study by Semret Seyoum and colleagues.
The CF Foundation is conducting research in collaboration with care teams, members of the CF community and researchers that will enhance our understanding of the short- and long-term impacts of financial tradeoffs, including curtailed employment and job lock. Initial findings from this work by A. Van Citters and colleagues show that more than half of people with CF want to discuss cost with their providers, and 83% of care team members want to partner with their patients to address their financial needs.
The CF Foundation’s patient navigation service, Compass, helps people with CF find resources to help them plan careers, review their insurance or find new options for insurance if they were to change jobs, or find financial assistance. Exploring these options can make available a wider range of possibilities for people with CF and their families.
References:
2019 Health Insurance Study. The George Washington University.
Seyoum S, et al. J Cyst Fibros. 2023;doi:10.1016/j.jcf.2023.01.002.
Van Citters A, et al. J Cyst Fibros. 2024;doi.org/10.1016/S1569-1993(24)01298-0.
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