Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register

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 patients’ 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 patient–physician 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 patient–physician 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.

Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?

“…4 Lammers et al noted that while some factors such as effective patient–physician interaction and communication were universally regarded as most important, the CHD patient population tends not to be homogenous, placing varying emphasis on factors that are viewed as important in their care. 21 As noted above, younger patients with less serious CHD paid more attention to shorter waiting times and the ambiance of the consulting room, while those with complex CHD were more concerned about the physician's qualifications and experience. Others placed special emphasis on social support and the importance of holistic care.…”

“…Lammers et al reported that although heterogeneous clusters of CHD patients prioritized different elements of their care as being the most important, effective patient-physician communication was universally regarded as a crucial factor in good and ongoing care. 21 Tied to the issue of shifting parent–child dynamics during the transition period (see below), other studies touched on how new patient-physician relationships can be hindered by parental hesitancy to leave the pediatric establishment where they felt secure and grateful for the success of the good long-term care their child had received. 21,22 Moons et al identified that leaving behind a familiar setting may be more challenging for parents than the patients themselves, as parents must now establish a new trust-based relationship in a setting where they are expected to relinquish some degree of control.…”

“…39 Lammers et al reported the existence of a cluster of “time sensitive patients” who tended to be younger and with less serious CHD, who were more likely to rate factors such as shorter drive, wait times for an appointment, the ambience of the consulting rooms, and the punctuality of the attending clinician as important aspects to influence their ongoing involvement. 21 In contrast, those with more complex CHD tended to seek out more knowledgeable and experienced clinicians.…”

Frequency, Mortality, and Predictors of Adverse Outcomes for Endocarditis in Patients with Congenital Heart Disease: Results of a Nationwide Analysis including 2512 Endocarditis Cases

“…This might lead to a timely diagnosis and proactive treatment in this cohort [ 9 ]. This also highlights the importance of adequate patient information, partnering with affected individuals and their parents, and educating them as well as physicians involved with the primary care for this patient group [ 9 , 15 , 16 , 17 , 18 , 19 ].…”

Conjoint Analysis: A Research Method to Study Patients’ Preferences and Personalize Care

“…In the hospital setting, implementation of CA constituted a feasible and useful tool in several clinical areas such as investigating hospital stakeholders' decision-making in the adoption of evidence-based interventions [68], eliciting patients preferences regarding diagnostics and screening [69,70], improving decision-making regarding patients' treatment [71,72], understanding patients' perceived needs and expectations [73], and determining the clinical factors that physicians prioritize regarding patients' treatment [74]. Furthermore, the CA method was very useful during the recent pandemic, as it has been used to understand how people prioritize when deciding whether to present to the emergency department during the coronavirus disease (COVID-19) pandemic for care unrelated to COVID-19 [75].…”