Barriers and facilitators for the implementation of patient-centered care in cardiogenetics: A delphi study among ERN GUARD-heart members

S. van Pottelberghe*, F. Heine, S. van Dooren, F. Hes, H.M. Kupper

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

1 Citation (Scopus)
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Current clinical practice regarding inherited cardiac conditions has a biomedical focus, while psychological and social expertize and capacity are often lacking. As patient-centered care entails a multidisciplinary approach, the present study (a) explores barriers and facilitators of implementing patient-centered care in cardiogenetics and (b) contrasts various stakeholder viewpoints and perceived
influence. We performed a three-round modified Delphi study using the input of a virtual expert panel comprising 25 medical professionals, 9 psychosocial professionals working in cardiogenetics, and 6 patient representatives. In round 1, the brainstorming phase and workshop breakout sessions were transcribed verbatim, coded and processed into unique statements listed as barriers
and facilitators. In round 2, we asked the expert panel to validate, add or revise the list of barriers and facilitators. In round 3, the most relevant barriers and facilitators were ranked in importance. The experts identified 6 barriers dispersed across various levels of implementation. Having a blind spot for the patient perspective was of the highest importance, while the lack of multidisciplinary communication was ranked the lowest. We selected 9 facilitators: 2 were workflow related, 5 advocated various aspects of increased
multidisciplinarity, and 2 suggested improvements in patient communication. This study revealed health system and organizational barriers and facilitators predominantly in implementing patient-centered care and only some patient-level factors. Some barriers and facilitators may be addressed easily (e.g., improving communication), while others may prove more complicated (e.g.,
biomedical thinking). Close interdisciplinary collaboration seems to be needed to implement PCC in cardio genetics successfully.
Original languageEnglish
Pages (from-to)1371-1380
JournalEuropean Journal of Human Genetics
Publication statusPublished - 2023




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