Building Quality Indicators to Improve Care for Adults With Congenital Heart Disease
Why the study?
There are no published quality indicators to promote quality measurement and improvement for outpatient management of adult congenital heart disease patients.
Key Points
- To develop valid and feasible quality indicators for the outpatient management of adult congenital heart disease across six conditions.
- Working groups reviewed published literature and clinical guidelines from the United States, Canada, and Europe to define candidate indicators with specified numerators, denominators, assessment periods, and data sources.
- A 9-member international panel of ACHD experts evaluated the indicators for validity and feasibility across two rounds of scoring (scale 1–9) using the UCLA/RAND modified-Delphi method.
- Of 62 proposed indicators, 29 were accepted in round 1 with 33 rated equivocal, and a second round finalized 55 accepted quality indicators (89% retention).
- The 55 retained indicators comprised 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.
- Accepted indicators reflected healthcare process (85%) and structure (15%) across clinical testing (45%), appointments (20%), counseling (18%), and procedures (15%), whereas 6 were removed for low validity and 1 for rating dispersion.
Structured PICO
P
Population
A 9-member panel of international ACHD experts from the US and Canada developed quality indicators for outpatient management of 6 adult congenital heart disease conditions.
I
Intervention
Development of quality indicators using the UCLA/RAND modified-Delphi method by a 9-member expert panel
O
Outcome
Final selection of valid and feasible quality indicators based on median scores
Limitations
- Relied on literature and practice guidelines that are mostly level of evidence C
- Relied on expert panel opinions, and a different panel might have selected different QIs
- No ACHD electrophysiologist or transplant specialist was included in the panel
- Lack of established references or gold standard criteria to define ACHD expertise
- Need for detailed measure specifications and field testing to fully operationalize and validate metrics
Key expert perspectives
Captured external expert commentary on this paper, strongest first. Original sources are linked where available.
“One group that we think may be most actionable for ACHD patients are the indicators regarding annual surveillance. This includes recommendations for routine follow up visits as well as regular interval testing. There are little data on which to base the frequency of visits and surveillance testing for this population, however, there was significant agreement among the international guidelines and the expert panelists for certain types of conditions and the recommended visits and testing. Gathering further information on practice patterns and relationships to outcomes will better inform our practices in the future.”
“From an awareness perspective, the working groups and expert panelists sought to 'raise the bar' for practitioners in certain areas. One example would be that the documentation of discussions regarding pregnancy and reproductive health were included for multiple conditions. This speaks to the importance of addressing this topic in the context of the cardiology practice.”
Implication
This project developed the first set of quality indicators for adult congenital heart disease care based on literature, guidelines, and a modified Delphi process.
Abstract
Objectives We 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 literature and US, 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 1–9, using the University of California Los Angeles (UCLA)/RAND modified-Delphi method and final QI selection was based on median scores. Results Sixty-two 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 literature, guidelines and a modified Delphi process. These QIs provide a quality of care assessment tool for six ACHD conditions. This rigorously designed set of QIs should facilitate measuring and improving quality of care for this growing group of patients.
Discussion
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Cite This Study
Gurvitz et al. (2013) studied Adult congenital heart disease (ACHD) (n=9). Modified Delphi method for quality indicator development was evaluated on Accepted quality indicators. A modified Delphi process resulted in the acceptance of 55 quality indicators for the outpatient management of six adult congenital heart disease conditions.