ISSN: 1885-5857 Impact factor 2023 7.2
Vol. 73. Num. 10.
Pages 804-811 (October 2020)

Original article
Adult congenital heart disease in Spain: health care structure and activity, and clinical characteristics

Cardiopatías congénitas del adulto en España: estructura, actividad y características clínicas

José María Oliver RuizaLaura Dos SubirábAna González GarcíacJoaquín Rueda SorianodPablo Ávila AlonsoaPastora Gallegoe on behalf of the Spanish Adult Congenital Heart Disease Network (RECCA)
Rev Esp Cardiol. 2020;73:792-410.1016/j.rec.2020.04.020
Fernando De Torres-Alba

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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 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.

Keywords

Adult congenital heart disease
Health care structure
Clinical characteristics
National survey

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