José María Oliver Ruiz1, Laura Dos Subirá2, Ana González García3, Joaquín Rueda Soriano4, Pablo Ávila Alonso5, Pastora Gallego6. 1. Servicio de Cardiología, Hospital General Universitario Gregorio Marañón, CIBERCV, Madrid, Spain. Electronic address: joliver@salud.madrid.org. 2. Servicio de Cardiología, Hospital Universitario Vall d'Hebron, CIBERCV, Barcelona, Spain. 3. Servicio de Cardiología, Hospital Universitario La Paz y CIBERCV, Madrid, Spain. 4. Servicio de Cardiología, Hospital Universitari i Politècnic La Fe, CIBERCV, Valencia, Spain. 5. Servicio de Cardiología, Hospital General Universitario Gregorio Marañón, CIBERCV, Madrid, Spain. 6. Servicio de Cardiología, Hospital Universitario Virgen del Rocío, Instituto BioMedicina (IBIS), CIBERCV, Sevilla, Spain.
Abstract
INTRODUCTION AND OBJECTIVES: To assess the structure of health care delivery and the clinical characteristics of adults with congenital heart disease (ACHD) attending specialized centers in Spain. METHODS: A survey was conducted among 32 Spanish centers in 2014. The centers were classified into 2 levels based on their resources. In 2017, a clinical dataset was collected of all consecutive patients attended for a 2-month period at these centers. RESULTS: A total of 31 centers (97%) completed the survey. Seven centers without specialized ACHD clinics were excluded from the analysis. In 2005, only 5 centers met the requirements for specific care in 2005. In 2014, there were 10 level 1 and 14 level 2 centers, with a total of 19 373 patients under follow-up. Health care structure was complete in most centers but only 33% had ACHD nurse specialists on staff and 29% had structured transition programs. Therapeutic procedures accounted for 99% and 91% of those reported by National Registries of Cardiac Surgery and Cardiac Catheterization, respectively. Among attended patients, 48% had moderately complex lesions and 24% had highly complex lesions. Although 46% of patients attending level 2 centers had simple lesions, 17% had complex lesions. CONCLUSIONS: The structure for ACHD health care delivery in Spain complies with international recommendations and is similar to that of other developed countries. Congenital heart diseases under specialized care consist mostly of moderately and highly complex lesions, even in level 2 centers. It would be desirable to reorganize patient follow-up according to international recommendations in clinical practice.
INTRODUCTION AND OBJECTIVES: To assess the structure of health care delivery and the clinical characteristics of adults with congenital heart disease (ACHD) attending specialized centers in Spain. METHODS: A survey was conducted among 32 Spanish centers in 2014. The centers were classified into 2 levels based on their resources. In 2017, a clinical dataset was collected of all consecutive patients attended for a 2-month period at these centers. RESULTS: A total of 31 centers (97%) completed the survey. Seven centers without specialized ACHD clinics were excluded from the analysis. In 2005, only 5 centers met the requirements for specific care in 2005. In 2014, there were 10 level 1 and 14 level 2 centers, with a total of 19 373 patients under follow-up. Health care structure was complete in most centers but only 33% had ACHD nurse specialists on staff and 29% had structured transition programs. Therapeutic procedures accounted for 99% and 91% of those reported by National Registries of Cardiac Surgery and Cardiac Catheterization, respectively. Among attended patients, 48% had moderately complex lesions and 24% had highly complex lesions. Although 46% of patients attending level 2 centers had simple lesions, 17% had complex lesions. CONCLUSIONS: The structure for ACHD health care delivery in Spain complies with international recommendations and is similar to that of other developed countries. Congenital heart diseases under specialized care consist mostly of moderately and highly complex lesions, even in level 2 centers. It would be desirable to reorganize patient follow-up according to international recommendations in clinical practice.
Authors: Francisco Javier Ruperti-Repilado; Daniel Tobler; Matthias Greutmann; Judith Bouchardy; Magalie Ladouceur; Laura Dos-Subira; Pastora Gallego; Harald Gabriel; Berto Bouma; Markus Schwerzmann Journal: Open Heart Date: 2021-04