Barriers and Facilitators for Implementation of Patient Centered Care in Cardiogenetics: a Delphi study.

Background Inherited cardiovascular disease is rare and requires counselling and follow-up at the genetic and the cardiology department, and patients may need psychological and social guidance as well. Complex phenomena like genomics and cardiovascular health require a multidisciplinary and multifaceted approach. In current clinical practice, a biomedical focus is dominant and expertise from psychological sciences and patients is often lacking. The current study aims to explore key barriers and facilitators of implementing patient-centered care in cardiogenetics. Methods We performed a three-round modified Delphi study, using the input of a virtual panel of experts, comprising of 25 medical professionals, 9 psychosocial professionals and 6 patient representatives working in cardiogenetics In the brainstorming phase, round 1 of the study: workshop breakout sessions were transcribed at verbatim, coded and processed into unique statements listed as barriers and facilitators. In round two, the expert-panel received via mail long-lists and were asked to validate, add or revise the list of barriers and facilitators. In round 3 the most relevant barriers and facilitators were ranked on importance. Results Overall, the experts identified 6 barriers, dispersed across various levels of implementation. Having a blind spot for the patient perspective was ranked of the highest importance, while the lack of communication between the various involved departments was ranked the lowest. We selected 9 facilitators, 2 were workflow related, 5 advocated various aspects of increased multidisciplinarity, and two concerned suggested improvements in patient communication. Conclusions This study revealed important differences between the perspectives of the various stakeholders. Medical professionals often have a biomedical orientation, which patients and psychosocial professionals found to be a barrier for patient-centered care. To improve clinical care in cardiogenetics and move the field towards patient-centered care we should focus on patients’ health goals and guide therapeutic decisions by integrating the different perspectives in treatment modules.