Being mobile is key for volume in a decentralised healthcare landscape

The major argument for centralising care is that it can generate enough volume to create expertise in a relatively small patient population (which is, nonetheless, growing).^{Reference Marelli, Ionescu-Ittu, Mackie, Guo, Dendukuri and Kaouache2, Reference Marelli, Mackie, Ionescu-Ittu, Rahme and Pilote3} Complex lesions are rare, at six patients per 10,000 people.^{Reference Marelli, Ionescu-Ittu, Mackie, Guo, Dendukuri and Kaouache2} Indeed, care at high-volume expertise centres has been associated with lower mortality rates in Canadian research, and this effect has mainly been found in patients with complex lesions.^{Reference Mylotte, Pilote and Ionescu-Ittu19} On the other hand, decentralised care was advocated by our interviewees because of the proximity of care. Regional access to care is a strength of the Belgian healthcare system,^{Reference Bjornberg20} and is one of the most important determinants of patient satisfaction worldwide.^{Reference Batbaatar, Dorjdagva, Luvsannyam, Savino and Amenta21}

These, at first sight, opposing benefits are not in fact mutually exclusive. Interviewees suggested regional representation by a limited number of peripheral cardiologists with a sub-specialisation in adult CHD, though these would not necessarily have to possess the same level of expertise as the adult CHD cardiologists at the tertiary centre. Local provision of basic care can be enhanced by electronic communication with the tertiary centre; in order to provide enough volume to maintain high-level care, the peripheral adult CHD cardiologists should periodically carry out consultations at the tertiary centre. Similarly, tertiary cardiologists should periodically frequent peripheral centres to disseminate knowledge and improve communication.

Improve referral (1) through direct communication in cases with no referral back

The interviewees were critical of potential regulations on patient referral, both because of the patient’s freedom of choice and because such regulations would not be feasible in the current Belgian healthcare system. On the other hand, communication with and feedback for the referring cardiologist appeared to be key in improving future referral patterns, especially in cases with no referral back. General cardiologists preferred verbal communication by telephone or, where that was not possible, sending a letter, which is congruent with the literature.^{Reference Vermeir, Vandijck and Degroote22} Furthermore, the perception of communication regarding referrals differed between general and adult CHD cardiologists: adult CHD cardiologists assessed the quality of communication more positively. General cardiologists indicated that there are still some shortcomings, although communication with adult CHD cardiologists appeared to be better than with other tertiary specialties. This difference in the assessment of communication quality has also been reported extensively in general practitioner–specialist physician interactions.^{Reference O’Malley and Reschovsky23–Reference Vermeir, Vandijck and Degroote26} The literature on communication between general practitioners and specialists has also demonstrated the importance of optimal communication: good communication was significantly associated with several patient-related outcomes, such as continuity of care, patient safety, patient satisfaction, and the efficient use of resources.^{Reference Vermeir, Vandijck and Degroote22}

Improve referral (2) by making general cardiologists aware: go local

There was a difference of opinion in terms of the types of lesion that general cardiologists can follow up on. General cardiologists were convinced that they are able to at least follow up on patients with mild lesions, but the extent to which they could care for patients with moderate lesions was unclear. Patients with complex lesions should be followed up by adult CHD cardiologists. Some adult CHD cardiologists believed that general cardiologists are (or should be) able to follow up on patients with mild lesions. On the other hand, other adult CHD cardiologists believed that even patients with mild lesions should be followed up only by cardiologists with an adult CHD sub-specialisation. Indeed, Cordina et al^{Reference Cordina, Nasir Ahmad and Kotchetkova27} demonstrated an increased risk of adverse outcomes if adult CHD patients, regardless of lesion complexity, were followed up by general cardiologists rather than being under the care of cardiologists with a congenital sub-specialisation. The odds of a major event while under the care of a general cardiologist was 5.0.^{Reference Cordina, Nasir Ahmad and Kotchetkova27} It was striking that general cardiologists deviated significantly more from the guidelines than did adult CHD cardiologists.^{Reference Cordina, Nasir Ahmad and Kotchetkova27} Accordingly, our results indicated limited knowledge of the guidelines among general cardiologists. According to general cardiologists, awareness of the special treatment needed by adult CHD patients can best be disseminated on the local level. For example, membership of a local quality group of no more than 25 doctors is needed to hold a non-obligatory certification. Such a platform can be ideal.

Furthermore, the visibility of current adult CHD care facilities seemed to be sub-optimal. It is recommended that their visibility be enhanced, to enable more efficient communication and referral, which would be beneficial for the patient. Mylotte et al^{Reference Mylotte, Pilote and Ionescu-Ittu19} reported lower mortality rates in adult CHD patients who were directly referred to specialised centres than among patients first referred to non-specialised centres.^{Reference Mylotte, Pilote and Ionescu-Ittu19}

Certification as a tool for valorising expertise and improving referral (3)

The idea of certification was advocated by the majority of interviewees because of the credibility it demonstrates to patients and colleagues, and also because it could improve communication. However, several concerns were raised: uncertainty about the lesions covered by the certification, the absence of a formal procedure for obtaining it, and the absence of a legal framework to make it enforceable in Belgium. It is beyond the scope of this paper to answer all these questions, but it is suggested that the certification be interpreted as a valorisation of the cardiologist’s special knowledge and experience, in addition to the general cardiology practice. A fellowship at a tertiary centre to obtain the certification could establish an instant relationship. Adult CHD certification and training practices in other countries^{Reference Warnes, Bhatt, Daniels, Gillam and Stout28–32} may guide the developing certification process in Belgium. Moreover, Baumgartner et al described the appropriate level of training to become an adult CHD cardiologist.^{Reference Baumgartner, Budts and Chessa9} No such formal training has yet been established in Belgium. The German example illustrates how these certifications could possibly enhance the visibility of those adult CHD services that are available country-wide.³³ However, there is still little scientific data^{Reference Fiorilli, Minges and Herrin34, Reference Norcini, Lipner and Kimball35} available on the impact of certification on patient-related outcomes, and conclusions are disputed.^{Reference King36}

Additionally, knowledge of adult CHD should be improved in cardiology residents, as general cardiologists are the gatekeepers to cardiology. General cardiologists should be able to detect problems related to adult CHD and to refer the patient appropriately. For this reason, it is suggested that a short but mandatory internship be embedded in the curriculum so that future general cardiologists experience the challenges of adult CHD care. Moreover, a mandatory internship could be beneficial for patients choosing to remain with a general cardiologist. Establishing a shared scheme of care with an adult CHD cardiologist is pivotal in these cases.

Explore expansions to the role of dedicated nurse specialist

Adult CHD cardiologists considered dedicated nurse specialists to be complementary healthcare professionals who are approachable by patients. A dedicated nurse specialist is ideally placed to educate patients on issues such as health behaviour, employment, and sport, among other topics. There was, however, no consensus on the role that dedicated nurse specialists can play in communication with peripheral cardiologists. A dedicated nurse specialist could potentially be a contact point improving communication, but doctors may continue to prefer direct doctor-to-doctor contact. Indeed, an increasing number of specialised centres employ dedicated nurse specialists,^{Reference Moons, Meijboom, Baumgartner, Trindade, Huyghe and Kaemmerer6, Reference Moons, Engelfriet, Kaemmerer, Meijboom, Oechslin and Mulder37} whose jobs are mainly oriented towards patients (coordination, triage and physical examination, telephone consultation, and patient education)^{Reference Moons, Scholte op Reimer and De Geest38}. The extent to which their role can be further developed is one of the research priorities determined by Goossens et al.^{Reference Goossens, Fleck, Canobbio, Harrison and Moons39} Another research priority is the impact of dedicated nurse specialists on patient-related outcomes in adult CHD,^{Reference Goossens, Fleck, Canobbio, Harrison and Moons39} as this is still unknown. However, research in (for instance) heart failure clinics has demonstrated fewer events, fewer admissions, and better self-care.^{Reference Stromberg, Martensson, Fridlund, Levin, Karlsson and Dahlstrom40}

The observation that dedicated nurse specialists are too expensive in Belgium, because their cost is not reimbursed, may soon become outdated: during the course of the interviews, important steps were made to officially recognise dedicated nurse specialists, and it will become possible for them to carry out certain medical acts alongside regular nursing acts. Legal regulation may eventually lead to the reimbursement of nursing consultations.

Limitations and strengths

The main limitation of this study is that selection bias cannot be excluded. An electronic invitation to participate in the study was sent to all members of the Belgian Society of Cardiology, but not every Belgian cardiologist is a member of this, and only a minority answered our call. The opinions of general cardiologists who responded may thus not represent the opinions of all general cardiologists. Second, a high variability can be seen in the general cardiologists we interviewed: some were working in tertiary hospitals, others in peripheral hospitals or private practices. Their working circumstances might have led to differences in opinions. We did not analyse these potential differences due to the small size of the subgroups. For the same reason, we did not analyse potential differences in opinions between cardiologists located in Flanders and those located in Wallonia. The literature would surely benefit from future general cardiologist-oriented research exploring the differences between such subgroups and regions. Nevertheless, since little research has been published on the opinions and roles of general cardiologists in adult CHD care, we regarded the variability in general cardiologists as an asset to the study. Moreover, a major strength of this study is the richness of the data, which were obtained by interviewing both general and adult CHD cardiologists.

The interviewees’ answers and the recommendations are primarily applicable to Belgian healthcare organisation, known for its relatively well-developed adult CHD care. Nonetheless, adult CHD care in other countries may also benefit from some of our conclusions, as this is a young and dynamic medical discipline with certain shortcomings, such as a worldwide high loss to follow-up. The development of an adequate and patient-centred adult CHD care demands a multidimensional approach that defines the role of different healthcare professionals, improves communication channels, and sensitises healthcare professionals. Our recommendations may, therefore, also act to strengthen the further development of adult CHD care in other countries.

A multidimensional approach also characterises the role of two types of healthcare professionals not previously discussed, namely, paediatric cardiologists and general practitioners. First, the transition period from paediatric to adult care in adolescence is a critical phase for stemming the loss of patients.^{Reference Goossens, Stephani and Hilderson12} It is recommended to initiate a gradual transition process, with an overlapping period where both the paediatric and adult CHD cardiologists are present and working in close collaboration.^{Reference Deanfield, Thaulow and Warnes7} It is pivotal that the adult CHD cardiologist examines the patient at least once before the potential transition to a shared care program can take place.^{Reference Deanfield, Thaulow and Warnes7, Reference Baumgartner, Bonhoeffer and De Groot8} Second, the general practitioner is an accessible and coordinating healthcare professional who can maintain a holistic overview of the patient’s medical history in a sector or specialised healthcare. For adult CHD patients, it is important that care is coordinated with the adult CHD cardiologist. General practitioners should be aware of the patient’s clinical condition and functional status.^{Reference Sable, Foster and Uzark41} However, general practitioners should be discouraged from giving advice without gaining the expert opinion of an adult CHD cardiologist. It is therefore recommended to establish a close liaison.⁴²