Lack of specialist care is associated with increased morbidity and mortality in adult congenital heart disease: a...

Area of Science:

• Cardiology
• Public Health
• Health Services Research

Background:

• Adults with congenital heart disease (ACHD) represent a growing population with complex healthcare needs.
• Optimal healthcare provision and the impact of specialized care on outcomes for ACHD patients are not fully understood.
• Existing data on healthcare utilization and outcomes in ACHD are limited.

Purpose of the Study:

• To provide population-based data on healthcare provision for adults with congenital heart disease (ACHD).
• To assess the impact of cardiology care versus primary care physician (PCP) management on morbidity and mortality in ACHD patients.
• To identify gaps in specialized cardiac care for the ACHD population.

Main Methods:

• Retrospective analysis of administrative data from a large German health insurance company (2014-2016).
• Inclusion of all insured ACHD patients (<70 years), stratified by care level (cardiology follow-up vs. PCP only).
• Multivariable and propensity score Cox analyses to assess associations between care level and outcomes (death, major events).

Main Results:

• 24,139 ACHD patients were analyzed; only 49.7% received cardiology follow-up.
• ACHD patients with cardiology follow-up had significantly lower risks of death (HR 0.81) and major events (HR 0.85) compared to PCP-only care.
• A 0.9% higher absolute mortality risk was observed in ACHD patients with moderate/severe lesions managed solely by PCPs.

Conclusions:

• Cardiology care is associated with superior survival and reduced major complications in ACHD patients.
• Approximately 50% of ACHD patients lack regular specialized cardiac care, even in well-resourced settings.
• Increased efforts are needed to improve PCP and patient awareness regarding appropriate ACHD care pathways.