Building quality indicators to improve care for adults with congenital heart disease

Abstract

Objectives: This study sought to develop quality indicators (QIs) for outpatient management of adult congenital heart disease (ACHD) patients.

Background: There are no published QIs to promote quality measurement and improvement for ACHD patients.

Methods: Working groups of ACHD experts reviewed published data and United States, Canadian, and European guidelines to identify candidate QIs. For each QI, we specified a numerator, denominator, period of assessment, and data source. We submitted the QIs to a 9-member panel of international ACHD experts. The panel rated the QIs for validity and feasibility in 2 rounds on a scale of 1 to 9 using the RAND/University of California-Los Angeles modified-Delphi method, and final QI selection was on the basis of median scores.

Results: A total of 62 QIs were identified regarding appropriateness and timing of clinical management, testing, and test interpretation. Each QI was ascertainable from health records. After the first round of rating, 29 QIs were accepted, none were rejected, and 33 were equivocal; on the second round, 55 QIs were accepted. Final QIs included: 8 for atrial septal defects; 9 for aortic coarctation; 12 for Eisenmenger; 9 for Fontan; 9 for D-transposition of the great arteries; and 8 for tetralogy of Fallot.

Conclusions: This project resulted in development of the first set of QIs for ACHD care based on published data, guidelines, and a modified Delphi process. These QIs provide a quality of care assessment tool for 6 ACHD conditions. This rigorously designed set of QIs should facilitate measuring and improving the quality of care for this growing group of patients.

Keywords: ACHD; ASD; CHD; COA; QI; RCT; TGA; TOF; adult congenital heart disease; atrial septal defect; coarctation of the aorta; congenital heart disease; d-transposition of the great arteries; quality improvement; quality indicator; quality of care; randomized clinical trials; tetralogy of Fallot.