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

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. You have full access to this article via

your institution. Download PDF SIMILAR CONTENT BEING VIEWED BY OTHERS THE STEPWISE PROCESS OF INTEGRATING A GENETIC COUNSELLOR INTO PRIMARY CARE Article 31 January 2022 BECOMING AGENTS FOR

GENOMIC CHANGE: GENETIC COUNSELLORS’ VIEWS OF PATIENT CARE AND IMPLEMENTATION INFLUENCES WHEN GENOMICS IS MAINSTREAMED Article Open access 29 August 2024 INTERVENTIONS TO SUPPORT PATIENTS

WITH SHARING GENETIC TEST RESULTS WITH AT-RISK RELATIVES: A SYNTHESIS WITHOUT META-ANALYSIS (SWIM) Article Open access 21 June 2023 INTRODUCTION The diagnosis of an inherited cardiac

condition (ICC) poses the patient with a range of potential challenges. These include uncertainty, anxiety, complex treatment-related decision-making, and medically indicated lifestyle

changes [1, 2]. Patients often experience multiple disease-related stressors, such as cardiac symptoms or physical restrictions. Patients may feel uncertain about their future or their

family’s health, fearing sudden cardiac death or a decline in health. Genetic counseling is a communication process that helps patients and their families understand the medical and

psychosocial implications of genetic testing [3]. Although the specific role of a cardiac genetic counsellor and specialized cardiac nurses have been described extensively [4,5,6], today the

number of genetic counselors remains relatively small across the globe [7, 8]. Genetic testing to diagnose possible ICC is challenging, as it requires clinicians and, to a certain degree,

patients to be knowledgeable about genetics [9, 10]. It also requires accurate and realistic expectations from all parties involved about the yield of genetic testing and its possibilities

and limitations in disease management [5, 11]. Over the past decade, the importance of patient-centered care (PCC) has become increasingly recognized, covering three major themes: the

patient experience, patient empowerment in decision-making, and building relationships between the healthcare provider(s) and the patient in care and treatment [12]. Information gathered

from patient-reported outcome measures (PROMs) give insight into the patient perspective of health, and well-being. PROMs help tailor the consultation to patients’ personal needs and give

them greater control over decisions and actions affecting their health and thus helps improving their quality of life (QOL) [13]. A complex disease group such as ICC requires a multifaceted

approach, necessitating cardiology, genetics, medical psychology, and behavioral science [14]. However, clinical practice has a biomedical orientation, where behavioral and psychological

sciences expertize and clinical capacity are often lacking. PCC focuses on patients’ health goals and guides therapeutic decisions by integrating these different perspectives into treatment

modules for patients [15]. In cardiogenetics, the field that covers ICC, this would mean providing the information necessary to make a shared decision to undergo genetic testing [11] or opt

for specific treatment pathways such as an implantable cardioverter-defibrillator (ICD). While this may positively influence patients’ understanding and recall of information, well-being,

and overall satisfaction [16], the current clinical practice may not provide patients with enough contemplation time. In addition, many physicians may not believe they are equipped to

understand thoroughly and to communicate difficult genetic results [5]. Finally, most clinicians endorse the important influence of emotional complaints, patient-reported well-being, and

quality of life on medical prognosis. However, primarily generic health-related quality of life (HRQOL) instruments are used to assess disease-specific outcomes. The PROMs used to gauge the

health-related quality of life in research [17,18,19] may not be ideal for routine outcome monitoring in the cardiogenetic clinic. Disease-specific measures are essential to serving the

broad at-risk and patient groups. The current study aimed to explore key barriers and facilitators for implementing PCC to improve clinical care in cardiogenetics and move the field toward

PCC. We further explored differences between the stakeholders directly involved in caring for patients with ICCs (_n_ = 34) or patient representatives (_n_ = 6) to determine whether they

experience different levels of influence regarding the identified barriers and facilitators. METHODS BACKGROUND & STUDY DESIGN The present study is part of a European project on

developing patient-related outcome measures (PROMS) for cardiogenetics, executed with the European Rare Disease Network (ERN) GUARD-Heart. The project is a multidisciplinary, international

collaboration of professionals caring for patients with a rare genetic cardiac disease and patient representatives. We performed a three-round modified Delphi study to fulfill our aims. The

Delphi study technique is an iterative feedback process and group facilitation technique that builds on ongoing data collection, created from a panel of expert stepwise input in subsequent

rounds to arrive at group consensus. Experts communicate their knowledge and expertize to see how their opinions align with those of other stakeholders [20,21,22]. We modified our study

design in 2 ways: panelists were not anonymous to the researcher, and we used a “ranking-type” Delphi study [21,22,23]. Figure S1 (online resource ESM_1) depicts the setup and analyses

planned in the different Delphi rounds. First, we took stock of the actual psychosocial care pathways in different European cardiogenetic centers and their use of PROMS. We then implemented

four 2 h workshops that consisted of (I) information provision on the current psychosocial care status and a lecture on PCC, (II) an example of patient-reported outcomes in onco-genetics

[24], (III) a case discussion, and (IV) the role of the patient organization in the care pathway. The second part of all the workshops was a brainstorming (12 focus groups) activity on

implementing PCC in cardiogenetics. These focus groups comprised the _first round_ of the Delphi study, in which we gathered opinions on the barriers and facilitators of implementing PCC in

cardiogenetics. Then, in _round 2_, the various experts were asked to validate, add or revise the list of barriers and facilitators. We narrowed the item list in round 3 and ranked it

according to importance. Furthermore, we examined the stakeholders’ level of influence. We designed the initial online survey and the questionnaires for rounds two and three using Qualtrics

XM. Data collection took place between October 2020 and September 2021. EXPERT PANEL Since ICC requires counseling and follow-up at the cardiology and genetic department and patients may

need psychological and social guidance, we needed a multidisciplinary panel. Accordingly, we invited cardiologists, clinical geneticists, psychologists, genetic counselors, specialist

nurses, and patient representatives working at or collaborating with ERN-associated cardiac centers as participants. An initial 24 ERN GUARD Heart-full members, 11 affiliated partners and 11

patient representative organizations were invited. Although there are no guidelines on the appropriate sample size for expert consensus on a Delphi forum, it is established that a minimum

sample size of 10 experts (who are representative of at least three disciplines) is adequate for content validity [23, 25]. PROCEDURE & ANALYSIS PREPARATION PHASE: ONLINE INVENTORY We

sent the online psychosocial care inventory (Qualtrics XM) together with the ERN GUARD-Heart newsletter via email. The survey came with an introduction letter, explaining the workshops’

objectives and study objectives. In addition to general demographics, five self-designed questions were asked about the circumstances and delivery of psychosocial care, with a yes, no-answer

option and a text box to describe who provides psychosocial care. ROUND 1: BRAINSTORMING We organized workshops on Zoom due to the COVID-19 pandemic. Per workshop, participants were divided

into 3–4 breakout sessions with diverse expertize, and each session was moderated by a member of the broader project’s research team. Twelve sessions were video and audio recorded and

transcribed _verbatim_. Several predetermined open-ended questions were asked to start discussions and prompt facilitators and barriers to implementing PCC as shown in Table S1 (online

resource ESM_1). Two authors (FeH and SVP) independently selected fragments from the session transcripts, coded them as barriers or facilitators, and classified them thematically.

Disagreements were resolved by discussion or by adding a third assessor (3 instances), in which case the majority vote counted. We identified 10 fragments complicating PCC that could not be

qualified as a barrier. Therefore, we added a third category of statements: General Complicating Factors (GCF). All authors agreed on the final version of the three-item lists. ROUND 2:

VALIDATION We used the barriers, facilitators and GCFs from _round 1_ to construct a digital questionnaire for a second round. The questionnaire contained 21 barrier statements, 28

facilitator statements, and 10 GCFs. We asked panelists to select (no limitation on total items of selection) the statements within each category they agreed with the most. The survey also

included open-ended questions asking participants to add new elements or suggest alternatives and arguments for their choices. We sent 2 reminders (+1 and +3 weeks after the initial

mailing). Six panelists suggested adding new items. We coded these additional items according to the _round 1_ procedure, resulting in a merge with already existing items. ROUND 3: NARROWING

DOWN AND RANKING Panelists received a personal feedback report on the results of _round 2_. This report compared their selected items with the group average and an invitation link to

participate in _round 3_. We only selected items that reached the agreement threshold (40–50%). In this round, we asked the panel to rank the shorter list of barriers (6 items), facilitators

(9 items) and GCFs (5 items) in order of importance on a Likert scale from 1 (most important) to 6 (least important). In addition, we asked stakeholders to indicate their level of influence

on a VAS scale from 0 (no influence) to 100 (a lot of influence) for each of the barriers, facilitators and GCFs. We calculated mean ranks and their standard deviation for the barriers and

facilitators for the total sample and split them by stakeholder category in SPSS 26.0. RESULTS PARTICIPANTS A total of 23 associated ERN-GUARD Heart centers professionals completed the

inventory on psychosocial care provision. Table S2 (online resource ESM_1) provides an overview of the participants’ characteristics. In total, 40 participants subscribed for the workshops

(65% females, mean age = 45 [range: 28–68], mean years working in the field = 12 [range: 2–33]). More than half of the participants were clinicians, and 22% were psychosocial healthcare

workers, such as psychologists, genetic counselors, social workers, and specialized cardiac nurses. Seventy-one per cent of the participants completed _round 1_ (_n_ = 28); 85% (_n_ = 24) of

those completed _round 2_ and 68% (_n_ = 19) completed _round 3_. CURRENT PSYCHOSOCIAL CARE PROVISION We found (Table 1) that psychosocial care was offered in approximately half of the

centers and implemented in ICC’s care pathway. The majority (78%) assessed psychosocial needs concerning genetic testing. A psychology department or clinic provides psychosocial care in only

five centers. PROMS were used to assess care needs in only one center. BARRIERS AND FACILITATORS IN IMPLEMENTING PCC IN CARDIOGENETICS Round 1 (i.e., the brainstorming sessions) resulted in

a list of 58 barrier statements and 49 facilitator statements, which we reduced after a duplicate check to a final list of 21 barrier statements, 28 facilitators and 10 statements

expressing GCFs as shown in Table S3 (online resource ESM_2). Table 2 describes 6 barriers acknowledged by at least 50% of the experts (_round 2_), ranked in order of importance (_round 3)_.

Barriers were themed around the current biomedical care orientation, various aspects of lack of knowledge about ICC, workflow issues (such as concerns that working patient-centered will

take up too much time, and how to organize follow-up care), and lack of communication. A blind spot for the patient perspective was of the highest importance, while the lack of communication

between the various departments was ranked the lowest. Table 3 shows 9 selected facilitators acknowledged by at least 50% of our experts. Two were workflow related, five advocated various

aspects of increased multidisciplinarity, and two suggested improvements in patient communication. GENERAL COMPLICATING FACTORS (GCFS) IN IMPLEMENTING PCC IN CARDIOGENETICS Four generally

complicating factors were selected and acknowledged by at least 45% of the experts. Items may not be qualified as a barrier or facilitator but predominantly reflect the complexity of having

a rare genetic cardiac disease, with needs dependent on the patients’ life stage. Table 4 shows the endorsement and ranking of the four GCFs. As the most important complicating factor,

difficulties with disclosing diagnosis and disease risk to the family were chosen, followed by a general lack of awareness about the role of psychosocial factors and care in these patients.

BARRIERS AND FACILITATORS PER PROFESSION Figures 1, 2 display the 6 most significant barriers and 9 most essential facilitators for each stakeholder group. We observed differences between

the stakeholder groups. The most crucial barrier lies at the patient level from the medical professional’s perspective. Clinicians question whether patients understand their information well

enough to make an informed decision. Patient representatives and psychosocial professionals rank patient health illiteracy lower in positions 4 and 5, respectively. On the other hand,

according to the psychosocial professionals and the patient representatives, the most significant barrier was the biomedical orientation of the current outcome assessment and the neglect of

patient-reported outcomes. Clinicians rank this barrier as fourth, attaching substantially less importance. An essential helping factor, according to the medical and psychosocial

professionals’ perspective, was the multidisciplinary management of patients through sustained collaboration between the different departments involved in caring for patients with ICC. In

addition, a structured assessment of the psychosocial needs of patients followed by an interdisciplinary discussion before decision-making on genetic testing would facilitate PCC according

to both professional groups. These two facilitators are deemed less critical from the patient representatives’ perspective. In their view, the presence of a psychosocial worker dedicated to

the cardio-genetic department would be the most helpful factor toward more patient-centered health care and starting conversations with patients about themselves. Other discrepancies between

stakeholder groups became apparent, e.g., regarding the discussion of risk stratification choices and therapeutic consequences with the patient (relatively unpopular with clinicians) and

the role of research programs (undesirable with patient representatives and psychosocial professionals). GENERAL COMPLICATING FACTORS (GFCS) PER PROFESSION Figure 3 displays the four most

significant GFCs ranked separately for each stakeholder group. An essential factor indicated by physicians and psychosocial workers is the factor ‘illness complexity’-people with different

lifestyles have different needs at cardiogenetic consultation. Patient representatives rank ‘lack of insight’ as a lack of awareness that psychosocial care is needed, as the most influential

factor was hindering the implementation of PCC. LEVEL OF INFLUENCE Figure 4 displays the level of influence of the three stakeholder groups on the 6 barriers and 9 facilitators. For the

barriers, the level of influence was relatively moderate, with most estimated influences lying between 40 and 60%. Several results stood out. Patient representatives indicated considerable

influence on assessing patient functioning and outcomes (84%). Likewise, they noted a significant impact on patient health literacy (82%). Patient representatives indicated the lowest

influence on the perceived lack of time professionals have for PCC (37%). Psychosocial professionals estimated their influence on the perceived lack of time to work patient-centered and the

uncertainty due to varying penetrance and variable expression of ICC to be the lowest (both 35%). Medical professionals felt most influential in improving patients’ health illiteracy (61%)

and improving communication between departments (63%). Generally, we found a more diverse picture in the facilitators than in the barriers, with larger standard deviations and most prominent

in the opinions of patient representatives. For 7 out of 9 facilitators, patient representatives were pointed out to have little influence (<38%). Clinicians felt they could exert more

influence on facilitators than barriers, with 6 out of 9 facilitators rated above 60%. Medical professionals estimated that they would have the most impact on being more open and transparent

in communicating with patients and increasing collaboration across departments and disciplines. Psychosocial professionals indicated that they could influence (<67%) communicating with

patients the most. DISCUSSION The current study explored barriers and facilitators for implementing PCC in cardiogenetics using a three-round ranking-style Delphi technique. We generated

consensus on a list of barriers and facilitators that highlighted the significance of partnership and collaboration between professionals and patients. Overall, the experts arrived at six

barriers to implementation, dispersed across multiple levels of healthcare delivery [26]. First, significant barriers at the healthcare system level, comprised the culture of health care

delivery (biomedical orientation) and the absence of PROMs [26, 27]. Second, at the organizational level, workflow, resources and multidisciplinary teamwork were essential barriers. These

findings exhibit considerable concordance with previous research on organizational barriers [26, 28]. Finally, an individual patient-oriented barrier comprises patients’ health literacy

[29]. One of the significant observations was that clinicians think it will take more time to work in a patient-centered manner. Therefore, time or resource constraints are a key issue in

today’s consultation. While it has already been described, there is an erroneous assumption that moving toward a patient-centered approach by adapting a shared decision consultation style

[30] or ‘letting patients speak’ [31] will increase the consultation length. However, a study on the determinants of consultation length in general practice showed that consultation length

was unaffected by the mention of psychosocial problems by the patient [32]. Shared decision-making may take longer than a standard-length consultation in the short term; once embedded in

clinical care, there is some evidence it saves time [27]. The notion of time becomes less straightforward when a ‘standard length’ consultation results in no adherence to treatment by a

patient with ICC; this might worsen symptoms and result in a need for more consultations later on [12]. There were essential differences between the perspectives of the various stakeholders.

In addition to previous studies [19,20,21, 25] on barriers to PCC, this study revealed the biomedical orientation of current outcome assessment and the neglect of patient-reported outcomes

of medical professionals, which patients and psychosocial professionals found to be a barrier to PCC. By focusing on exchanging medical information, one may miss significant patient

concerns. Patients often come to their visits with multiple unspoken fears [31]; helping patients articulate these concerns may increase active patient participation, which is perceived as a

facilitator for PCC [29]. For the facilitators, organizational and cultural aspects were of the most importance. All our experts expressed that interdisciplinary collaboration across the

entire care pathway would help implement PCC; as observed in previous studies, experts describe a smooth flow of information within and between care teams as a vital facilitator [29, 33].

Medical and psychosocial care professionals were on the same page concerning the facilitator ranking. The patient representatives operationalized that collaboration with an in-house

psychosocial healthcare worker at the cardio-genetics department is best to facilitate PCC. Other studies previously identified IT infrastructure as a viable option to reduce problems with

fragmented care and vital to organizational effectiveness in promoting PCC [28, 33]. IT infrastructure did not emerge as an essential theme in this study, where stakeholders ranked it least

important. At the individual level, we identified the professional expertize of employees and an empathic attitude of the staff as characteristics that determine the provision of PCC. Our

exploration also identified several general complicating factors inherent to the complexity of ICC in terms of the societal consequences the patient faces. For example, the extent and

process of family disclosure and the general lack of awareness that psychosocial care is needed to resolve some of these harsh consequences. In genetics, much research data exist on legal,

moral, and ethical implications [25,26,27]. There are many risks and benefits related to genetic testing (such as practical consequences, privacy issues, and insurability) upon which

patients need information. Disclosure to family members is a delicate issue; patients sometimes hesitate to inform their relatives that they may be at risk for developing a specific

disorder. Privacy concerns restrict the ability of healthcare providers to disseminate information directly to potentially affected relatives without authorization from the index patient

[6]. Finally, patients worry that when a hereditary predisposition is identified, they might have difficulty obtaining health, life or disability insurance and experience employment issues

[28]. While these issues complicate the care for patients with ICC, they also may be an incentive to deliver PCC. Many of the barriers and facilitators identified in this study display

similarities (e.g., workflow, teamwork, communication and culture) with previous studies that discussed the challenges to implementation of PCC at different levels: macro level policy

measures (healthcare delivery) and micro level incentives at the organizational level and the patient-provider level [26, 29]. The level of influence stakeholders directly involved in the

care for patients with ICC and patient representatives’ experience on the identified barriers and facilitators received no attention in other studies. Overall, the expert panel experienced a

significant influence on patients’ literacy. However, they (patient representatives and psychosocial workers) ranked it less as an essential obstacle (fourth or fifth place). They share so

much impact at the patient level that they do not identify it as a barrier but rather as an opportunity to intervene. Patient representatives and psychosocial workers identified ‘uncertainty

due to variability and ‘time’ as essential barriers and stated low levels of influence on these barriers. How genetic test results are conveyed can vary considerably in different practice

environments, countries, and laws. In genetic cardiology in Belgium, physicians try to disclose genetic test results to patients in the presence of a psychosocial healthcare worker

(psychologist, genetic counsellor, social worker, specialized cardiac nurse). However, psychosocial workers do not control or disclose clinical information; they can clarify given

information by psychoeducation. There is a noticeable discrepancy between healthcare providers’ assessments of the patient’s needs, the level of influence they can exert on those needs and

the care provided in practice. This study shows that stakeholders experience high levels of impact on many barriers and facilitators, and professionals notice many patient needs. However, we

observed no change in clinical practice. Our general exploratory survey on current psychosocial care in genetic cardiology showed that psychosocial care and a psychosocial assessment

regarding testing are often not performed by a psychologist or social worker. Instead, cardiologists and geneticists or centers only offer psychological counseling on the explicit demand of

the patient or the next of kin. Without a standardized assessment of the needs of patients, clinicians tend to rely on their subjective observation to decide if further psychological support

is necessary. However, a study on the role of psychological stress in cardiogenetics emphasizes the importance of the routine inclusion of clinical psychologists in interdisciplinary teams

[34]. Supporting teamwork and cohesion among staff members facilitates PCC. One of the core roles of psychologists in hospitals is clinical assessment, using tests to assess current

functioning, coping strategies, and ascertain risk management of patients [35]. In addition, becoming a patient-centered, highly functional care team requires a clear definition of the roles

and responsibilities of each team member [36]. Future research should consider the abovementioned challenges and quantify how the barriers and facilitators to implementing PCC in

cardiogenetics affect daily practice. For example, specific PCC interventions (e.g., structural assessment across the healthcare pathway; explicit and consistent leadership) may be designed

to overcome barriers such as the culture of care delivery (mono- vs multidisciplinary) and tested for their feasibility in daily clinical practice. Information gathered from PROMs may

provide insight into the patient perspective of clinical management, health and well-being [13] and is considered a core element of PCC. However, primarily generic HRQOL instruments are used

in research [19, 37,38,39,40]. Implementating HRQOL surveys in clinical practice routine outcome monitoring is still developing. Disease-specific PROMs are rare, and focus on ICD mainly

[19, 39, 41]. Efforts to extend this work and design a disease-specific PROM for cardiogenetics are underway. The patient and the cardiogenetic team can optimize patient care with improved

communication, collaboration (shared decision-making), and merging of individual observations and expertize. Often, specialized training is not organized due to economic costs

(organizational level resource constraint) [20, 26]. Therefore, different cardiogenetic centers could combine their expertize and provide training for all stakeholders (medical, psychosocial

and patient representatives) to bridge the economic cost and the gaps in knowledge. To build relationships between professionals and patients, we first need to implement this joint

expertize from all stakeholders and endorse collaboration, specialized training and shared decision-making to address the emotional concerns, well-being and quality of life issues in

patients with ICC. Several limitations should be considered when interpreting this study’s results. Although there are no guidelines on the appropriate sample size for expert consensus

Delphi studies, it is established that a minimum sample size of 10 experts (who are representative of at least three disciplines) is adequate for content validity [25, 42]. The attrition

rate in round 3 was 68%, which may affect the validity of the results. Nevertheless, according to Delphi-study recommendations, the dropout was still acceptable [21, 25]. Furthermore, the

subdivision per profession made the subgroup sample size smaller than ideal. While it is essential to hear from different perspectives working in cardiogenetics, we should interpret the

analyses per profession with caution due to the small sample size. The international composition of the expert panel and the diversity of participants is a strength of this study. In

conclusion, this study revealed health system and organizational barriers and facilitators to implementing PCC and some patient-level factors. The barriers and facilitators to which the

experts assigned a high level of influence may be dealt with relatively quickly (e.g., improving communication and health literacy). Changing other barriers, such as biomedical dominance or

lack of psychosocial expertize and capacity, may be more challenging. Moreover, close collaboration between medical and psychosocial professionals and patients seems to be needed to

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Article  CAS  PubMed  Google Scholar  Download references 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 * 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 * 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 * Center of Research on Psychological disorders and Somatic diseases; Department of Medical & Clinical Psychology,

Tilburg University, Tilburg, the Netherlands Fenja Heine & Nina Kupper Authors * Saar van Pottelberghe View author publications You can also search for this author inPubMed Google

Scholar * Fenja Heine View author publications You can also search for this author inPubMed Google Scholar * Sonia Van Dooren View author publications You can also search for this author

inPubMed Google Scholar * Frederik Hes View author publications You can also search for this author inPubMed Google Scholar * Nina Kupper View author publications You can also search for

this author inPubMed Google Scholar 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. ETHICS DECLARATIONS COMPETING INTERESTS The authors declare no competing interests. ETHICS APPROVAL 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. ADDITIONAL INFORMATION PUBLISHER’S NOTE Springer Nature remains

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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 Download citation * Received: 20 June 2022 * Revised: 24 October 2022 * Accepted: 08 December 2022

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