Abstract
(1) Background: Congenital heart disease (CHD) requires lifelong specialized care. Failure to follow up and gaps in care are common in this group and lead to increased morbidity/mortality. We evaluated patientsâ perceived needs and expectations regarding specialized care using state-of-the-art statistical and market research techniques based on a nationwide sample of CHD patients. (2) Methods: A random sample of adults with CHD registered in the German National Register for Congenital Heart Defects were invited to answer an adaptive online questionnaire based on the conjoint analysis (CA) technique. CA determines the relative importance of various aspects of health care provision and allows individuals to trade between characteristics, thus recognizing limited resources. (3) Results: 637 patients participated (mean age 33.8 ± 12.6 years; 55.6% female; disease complexity: simple defect 12.6%, moderate complexity 40.3%, complex CHD 40.2%) in the analysis. Patients assigned the highest relative importance to aspects of patientâphysician communication, physician qualifications, waiting time, medical care, and medical equipment. Comfort-related aspects such as driving time or hotel aspects of care received much lower scores. We identified four well-defined clusters of patients with differing expectation patterns: (i) time sensitive patients; (ii) excellence seeking patients; (iii) continuity seekers, and (iv) support seeking patients. (4) Conclusions: Adult CHD patients rank effective patientâphysician interaction and communication as the most important factors. As we identified significant heterogeneity between CHD patients, centers should cater for individual preferences and integrate individual needs into treatment plans to prevent failure to follow up and ensure patient compliance.
Highlights
To evaluate subjective patient needs and expectations related to specialized care in Congenital heart disease (CHD), we applied state-of-the-art statistical and market research methods to a sample of adult patients with CHD registered in the German National Register for Congenital Heart Defects
637 patients were included in the statistical analyses
Diagnoses covered the entire spectrum of CHD including, for example, 41 patients with univentricular hearts, 93 Tetralogy of Fallot patients, 53 patients with a systemic right ventricle, 31 atrioventricular septal defect (AVSD) patients, nine patients with Ebstein anomaly, 60 aortic coarctation, 60 patients with a ventricular septal defect, and 44 patients with an atrial septal defect
Summary
Congenital heart disease (CHD) is the most common congenital defect in humans [1,2]. The integration of individual patient needs and preferences into treatment plans could help to prevent failure to follow-up and ensure patient compliance [14,15]. To evaluate subjective patient needs and expectations related to specialized care in CHD, we applied state-of-the-art statistical and market research methods to a sample of adult patients with CHD registered in the German National Register for Congenital Heart Defects. These patients were invited to answer an adaptive online questionnaire based on the conjoint analysis (CA) technique
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