Better guidelines, care needed for rising ACHD-related heart failure hospitalizations

Adult congenital heart disease (ACHD)-related heart failure (HF) hospitalizations have increased in recent years and are associated with disproportionately higher costs, procedural burden and health resource use, according to new research published in the Journal of the American Heart Association.

“Studies of nationwide ACHD hospital admissions have provided preliminary insights into ACHD HF hospitalization trends, but without sufficient detail to inform existing HF services or to anticipate future health resource needs,” wrote Luke J. Burchill, MBBS, PhD, of the Knight Cardiovascular Institute. “Little is known about the clinical profile of patients with ACHD HF, including where they are being hospitalized, healthcare costs, and whether treatment varies between high- versus low-volume ACHD centers. This study sought to address these knowledge gaps.”

The researchers utilized the Nationwide Inpatient Sample (NIS) to compare ACHD- and non-ACHD-related HF hospitalization and health resource use trends. They determined health resource use by totaling hospital charges, length of stay and procedural burden, finding:

  • Hospitalizations for young adults with ACHD-related HF increased.
  • 87,175 ACHD-related HF hospitalizations occurred between 1998 and 2011, an increase of 91 percent. Non-ACHD HF hospitalizations saw only a 21 percent increase during the same time.
  • ACHD-related HF hospitalizations were on average 7.2 days long, compared to non-ACHD HF hospitalizations, which were only 6.8 days long. This in turn caused greater procedural burden and higher charges.
  • Charges for the average ACHD-related HF hospitalizations were $81,332—64 percent higher than the cost of non-ACHD HF hospitalizations ($52,050).
  • The average cost of ACHD-related HF hospitalization increased by 258 percent during the study period, from $26,533 in 1998 to $94,887 in 2011, which was more than double the cost of non-ACHD HF hospitalizations.

The researchers found differences in practice with ACHD-related HF hospitalizations in high-volume ACHD centers. Patients at high-volume centers are more likely to undergo more comprehensive care, including hemodynamic testing, receive cardiac resynchronization/defibrillator devices and mechanical circulatory support.

“The increasing number of patients being hospitalized for ACHD-related HF presents new challenges for ACHD and HF specialists alike,” the authors wrote. “Significant variation in the approach taken by high- and low- volume ACHD centers caring for patients with ACHD HF suggests a need for ACHD-specific HF guidelines, care, and training pathways. The disproportionate costs associated with caring for patients with ACHD HF highlight the importance of ACHD centers being properly supported when providing specialist care.”

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