Anyone with a congenital heart defect is dependent on regular specialized preventive and medical care, even after correction has taken place - for the rest of their lives.

Failure to provide follow-up and preventive care has been shown to increase the risk of serious and life-threatening diseases. A study conducted by the Competence Network for Congenital Heart Defects has proven this. At the same time, it revealed significant gaps in medical care for adults with congenital heart defects (ACHD).

Half of patients receive inadequate care. "For the individual as well as for society, this is associated with considerable, also cost-intensive consequences," warns Professor Gerhard-Paul Diller, ACHD specialist at Münster University Hospital (UKM).

What Encourages Compliance?

For good medical care, the willingness of adults with congenital heart defects to have their own heart health examined at regular intervals by specialized specialists plays an important role. In medical jargon, this is referred to as compliance.

But how does the care situation look from the patients' perspective? What are their experiences, expectations and wishes? What exactly promotes their willingness and what hinders it? Scientists at the Competence Network for Congenital Heart Defects have now investigated this on the basis of targeted surveys of 637 adult participants in the National Registry, resulting in clear recommendations for future medical care.

Not All CHD Patients Are Alike

To do this, the scientists used state-of-the-art market research methods in collaboration with the Center for Adults with Congenital Heart Defects Münster and Steinbeis University Berlin. "Adults with congenital heart defects have very different requirements, needs and expectations when it comes to their health. For some, the shortest possible distances and waiting times are the most important things. Others place much more value on the qualifications of the treating facility or physician. And still others are primarily interested in long-term care from the doctor they trust or in special support services for social issues or psychological problems," says Ulrike Bauer, Managing Director of the Competence Network for Congenital Heart Defects and the National Registry.

The Patient is King

Based on a method of modern consumer and market research, the so-called conjoint analysis, the scientists were able to determine these important aspects more precisely and classify them in such a way that concrete measures for improving care can be derived from them. In medical research, such a study approach is still unique, knows Astrid Lammers, a physician at Münster University Hospital (UKM): "As a rule, the medical specialist's view of the patient dominates. We deliberately reversed this perspective and chose a scientific approach that sees patients as 'King Customer' and experts for their own health," says the study's first author.

The scientists were able to identify four core groups with different expectation patterns using conjoint analysis, a method from modern market and consumer research:

Doctor-Patient, Patient-Doctor

Communication isn't everything, but without communication, everything is nothing. According to the study, this also applies to lifelong follow-up care for a congenital heart defect. For most of the patients surveyed, a trusting exchange with the attending physician, who provides clear and comprehensible information, ranks highest, closely followed by the physician's qualifications, waiting time, medical care and medical equipment.

A partial result of the study illustrates how important specialized care is from the patient's point of view, and what demands they make on such care: "Treatment exclusively conducted by the general practitioner, poor doctor-patient communication, i.e. the doctor takes his time but does not explain things clearly and comprehensibly, and waiting times at the doctor's office of up to four hours were consistently among the knockout criteria," says Astrid Lammers. For a good physician patient relationship against it many would accept a longer travel time and longer waiting periods. Comfort and pure care aspects also play a comparatively minor role for patients.

What Do Individual Patients Want?

There were quite different subjective weightings, as co-author and diploma psychologist Paul Helm by the example points out: "Women tended to place more value on holistic care and understandable explanations, while men were more interested in the doctor's qualifications and more convenient opening hours. Younger patients tended to value short distances and waiting times, as well as convenience issues."

Different requirements also resulted from educational level and employment situation as well as the severity of the congenital heart defect. From the researchers' point of view, the results were hardly surprising when comparing the diagnoses of the study participants. For patients with complex heart defects, the high qualification of the physician plays an important role; a holistic care model, center-oriented treatment and the quality of the available medical equipment are also more important for them.

Valuable Advice for Improving Medical Care

The conjoint analysis helped to bring the different needs down to the most important common denominator: "Comprehensive, holistic care that goes beyond cardiac problems, sufficient time for consultation, and clear and comprehensible, comprehensive explanations are the success-critical factors for good medical care named by patients," says Astrid Lammers, summarizing the main result.

In the view of the study authors, recognition of the different patterns of expectation that are concentrated in the four core groups identified - time-sensitive, excellence-seeking, continuity-seeking and support-seeking patients - should therefore also be a supporting element of service planning and the design of treatment offerings in the interest of society: "Increased patient satisfaction lowers the rate of missed follow-up examinations. Cost burdens in the health care system could be sustainably reduced in this way," says Astrid Lammers, explaining the recommendation.

To achieve this, it is also important to take into account the patients' need for support in social issues and in cognitive and psychological challenges, adds Paul Helm: "The situation of people with congenital heart defects still encounters a great deal of ignorance and lack of understanding in our society. In many cases, the underlying disease brings with it considerable social disadvantages and enormous psychological burdens." Patients would also like to see more medical support in this area.