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

European Journal of Human Genetics volume 31, pages 1371–1380 (2023)Cite this article

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Abstract

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 cardiogenetics successfully.

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Fig. 1: Barriers stratified by stakeholder group.
Fig. 2: Facilitators stratified by stakeholder group.
Fig. 3: General Complicating Factors (GFC) by stakeholder group.
Fig. 4: The personal level of influence barriers/facilitators per stratified group.

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Data availability

The data underlying this paper are available in the paper and in its online supplementary material.

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Acknowledgements

We would like to thank all of the EPIC consortium members (European group for PROMS In Cardiogenetics) for their participation to the online survey, the workshops and the Delphi-study.

Funding

SVP is supported by the Innoviris Brussels Region BRIDGE grant IGenCare. (Grant number: BRGIMP12: https://researchportal.vub.be/en/projects/bridge-igencare-integrated-personalized-medical-genomics-care-sol).

Author information

Authors and Affiliations

  1. Vrije Universiteit Brussel (VUB), Universitair Ziekenhuis Brussel (UZ Brussel), Clinical Sciences, research group Reproduction and Genetics, Centre for Medical Genetics, Laarbeeklaan 101, 1090, Brussels, Belgium

    Saar van Pottelberghe, Sonia Van Dooren & Frederik Hes

  2. Member of the European Reference Network for rare, low prevalence and/or complex diseases of the heart: ERN GUARD-Heart, Amsterdam, the Netherlands

    Saar van Pottelberghe, Sonia Van Dooren & Frederik Hes

  3. Center of Research on Psychological disorders and Somatic diseases; Department of Medical & Clinical Psychology, Tilburg University, Tilburg, the Netherlands

    Fenja Heine & Nina Kupper

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  1. Saar van Pottelberghe
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  2. Fenja Heine
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  4. Frederik Hes
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  5. Nina Kupper
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by [SVP], [FeH] and [NK]. The first draft of the paper was written by [SVP] and [NK] and all authors commented on previous versions of the paper. All authors read and approved the final paper.

Corresponding author

Correspondence to Saar van Pottelberghe.

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The authors declare no competing interests.

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The Delphi study abides by the ethical requirements of the University Hospital of Brussels, aiming to assure ‘rigor, respect and responsibility’ in the conduct of the research project. Ethical approval was not required. Stakeholders participating in the Delphi-study were informed of the study and gave consent for participation.

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van Pottelberghe, S., Heine, F., Van Dooren, S. et al. Barriers and facilitators for the implementation of patient-centered care in cardiogenetics: a Delphi study among ERN GUARD-heart members. Eur J Hum Genet 31, 1371–1380 (2023). https://doi.org/10.1038/s41431-022-01268-7

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