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Access to Specialized Care Across the Lifespan in Tetralogy of Fallot
Andrew S Mackie1, Katia Bravo-Jaimes2, Michelle Keir3
1Division of Cardiology, Department of Pediatrics, Stollery Children's Hospital, University of Alberta, Edmonton, Alberta, Canada.
Insights
Individuals with tetralogy of Fallot need lifelong specialized care, but face significant barriers to accessing cardiology and other essential health services. Social determinants of health, like socioeconomic status and race, exacerbate these access challenges, leading to common lapses in care.
Area of Science:
- Cardiology
- Public Health
- Health Equity
Background:
- Lifelong specialized congenital heart disease care is crucial for individuals with tetralogy of Fallot to manage late complications.
- Access to essential medical services, including cardiology, mental health, and dental care, is a significant challenge for this population.
- Health care inequities, exacerbated by the COVID-19 pandemic, persist and disproportionately affect individuals with tetralogy of Fallot.
Purpose of the Study:
- To review challenges in accessing specialized care for individuals with tetralogy of Fallot.
- To examine the impact of social determinants of health on care access for this population.
- To offer recommendations for improving care access within Canadian and American health systems.
Main Methods:
- Literature review summarizing challenges in specialized care access.
- Focus on the influence of social determinants of health on health care access.
- Analysis of barriers within Canadian and American health care systems.
Main Results:
- Social factors such as sex, gender, race, socioeconomic status, education, geography, and insurance status create substantial barriers to care.
- Patient-related factors, including the belief of being cured and lack of awareness of ongoing needs, contribute to care gaps.
- Transition from pediatric to adult care and a shortage of trained professionals for adults with congenital heart disease are critical barriers.
Conclusions:
- Individuals with tetralogy of Fallot experience multifaceted barriers to accessing essential specialized care, significantly influenced by social determinants of health.
- Addressing these social determinants and improving health system navigation are critical to ensuring continuous and equitable care.
- System-level changes and increased training for adult congenital heart disease care professionals are necessary to mitigate access challenges.
Abstract:
Individuals living with tetralogy of Fallot require lifelong specialized congenital heart disease care to monitor for and manage potential late complications. However, access to cardiology care remains a challenge for many patients, as does access to mental health services, dental care, obstetrical care, and other specialties required by this population. Inequities in health care access were highlighted by the COVID-19 pandemic and continue to exist. Paradoxically, many social factors influence an individual's need for care, yet inadvertently restrict access to it. These include sex and gender, being a member of a racial or ethnic historically excluded group, lower educational attainment, lower socioeconomic status, living remotely from tertiary care centres, transportation difficulties, inadequate health insurance, occupational instability, and prior experiences with discrimination in the health care setting. These factors may coexist and have compounding effects. In addition, many patients believe that they are cured and unaware of the need for specialized follow-up. For these reasons, lapses in care are common, particularly around the time of transfer from paediatric to adult care. The lack of trained health care professionals for adults with congenital heart disease presents an additional barrier, even in higher income countries. This review summarizes challenges regarding access to multiple domains of specialized care for individuals with tetralogy of Fallot, with a focus on the impact of social determinants of health. Specific recommendations to improve access to care within Canadian and American systems are offered.
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