From hypertrophic cardiomyopathy centers to inherited cardiovascular disease centers in Europe. A small or a major step? A position paper from the Nucleus of the Working Group on Myocardial and Pericardial Diseases of the Portuguese Society of Cardiology.

The prevalence, complexity, clinical importance, heterogeneity and unpredictability of inherited cardiovascular diseases make the development of inherited cardiovascular disease centers an inevitability, with the ultimate goal of reducing the morbidity and mortality associated with these conditions. An inherited cardiovascular disease center may be seen as a subunit of a cardiology department, with health professionals specializing in these types of disorders, organized to provide excellence in all related areas, including diagnosis, treatment, followup, prevention, risk stratification and prognosis. Among its objectives are the development of action protocols and the creation of databases that enable patients to be included in national and international research networks. To achieve these objectives these centers should include functional units of clinical and basic sciences, research, training and education, acting in harmony in a holistic approach to patients and their families. As most experience on inherited cardiovascular diseases is based on hypertrophic cardiomyopathy and on "hypertrophic cardiomyopathy centers", these centers represent an excellent opportunity to learn how to set up inherited cardiovascular disease centers. European centers will differ from country to country, reflecting the heterogeneity of national health systems, but will share a common core, presented in this document. Though we are aware that this ambitious project is not at all easy and may be difficult to implement in its entirety--in fact we consider it a major step--our position is that all the efforts to achieve it are worthwhile, considering that the main goal will always be the well-being of those affected by these particular disorders.

The long road to better ACHD care.

The care of adult patients with congenital heart defects in the United States is spotty at best, and needs to improve greatly if the needs of these patients are to be met. The care of American children with congenital heart defects is generally excellent. Pediatric cardiac services are well established and well supported. The care of adults with congenital heart disease (CHD) is well established in only a few American centers. While there are an increasing number of clinics, they are generally poorly resourced with relatively few patients. If located in adult cardiology programs, they are usually minor players. If located in pediatric cardiac programs, they are usually minor players as well. Training programs for adult CHD (ACHD) caregivers are few, informal, and poorly funded. To improve the situation, we need perhaps 25 well-resourced and well-established regional ACHD centers in the United States. We need to stop the loss to care of CHD patients at risk of poor outcomes. We need to educate patients and families about the need for lifelong and skilled surveillance and care. We need to effect an orderly transfer from pediatric to adult care. We need to strengthen the human resource infrastructure of ACHD care through the training and hiring of healthcare professionals of a quality equivalent to those working in the pediatric care environment. We need to demonstrate that adult care is high quality care. We need more high-quality ACHD research. The ACHD community needs to establish its credibility with pediatric cardiac providers, adult cardiology groups, with governments, with professional organizations, and with research funding agencies. Accordingly, there is a need for strong political action on behalf of American ACHD patients. This must be led by patients and families. These efforts should be supported by pediatric cardiologists and children's hospitals, as well as by national professional organizations, governments, and health insurance companies. The goal of this political action should be to see that ACHD patients can receive high-quality lifelong surveillance, that we lose fewer patients to care, and that the staff and other services needed are available nationwide.

Reflection of a 7-year patient care program: implementing and sustaining an integrative hospital program.

Integrative alternative therapies, also known as holistic therapies, have many applications in hospitals and health centers. These may include relaxation therapies, meditation, massage, reflexology, and Reiki or healing touch. Patients today are looking for these services, and institutions continue to explore ways to provide them without affecting their bottom line. The Integrative Cardiac Wellness Program is such a service, and its growth and longevity comes out of the personal investment of the staff to the program and to their patients. The literature review on the permanence of caring practice shows that caring about your work with patients, not just the job, is critical in longevity (Graber & Mitcham, 2004). The holistic nurses' and staff 's commitment to their professional growth within their specialty and their personal spiritual practice as experts in the field forms the backbone of the Integrative Wellness Program's success. It has been in existence for 7 years, providing integrative healing therapies to more than 7,000 patients, making it one of the most experienced. The program now serves cardiac surgery patients, and patients who have been diagnosed with cancer.

Caring for adults with congenital cardiac disease: successes and challenges for 2007 and beyond.

Patients with congenital cardiac disease require lifelong medical care. Current challenges that face practitioners who care for adults with congenital heart disease include identifying the best location for procedures, which could be a children's hospital, an adult hospital, or a tertiary care facility; providing appropriate antenatal management of pregnant women with congenitally malformed hearts, and continuing this care in the peripartum period; and securing the infrastructure and expertise of the non-cardiac subspecialties, such as nephrology, hepatology, pulmonary medicine, and haematology. The objectives of this review are to outline the common problems that confront this population of patients and the medical community, to identify challenges encountered in establishing a programme for care of adults with congenitally malformed hearts, and to review the spectrum of disease and operations that have been identified in a high volume tertiary care centre for adult patients with congenital cardiac disease. Three chosen examples of the fundamental problems facing the practitioner and patient in the United States of America in 2007 are the neglected patient with congenital cardiac disease, weak infrastructure for adults with congenital cardiac disease, and family planning and management of pregnancy for patients with congenital cardiac disease. Patients with adult congenital cardiac disease often do not receive appropriate surveillance. Three fundamental reasons for this problem are, first, that most adults with congenitally malformed hearts have been lost to follow-up by specialists, and are either receiving community care or no care at all. Second, patients and their families have not been educated about their malformed hearts, what to expect, and how to protect their interests most effectively. Third, adult physicians have not been educated about the complexity of the adult with a congenitally malformed heart. This combination can be fatal for adults with complications related to their congenitally malformed heart, or its prior treatment. Two solutions would improve surveillance and care for the next generation of patients coming out of the care of paediatric cardiologists. The first would be to educate patients and their families during childhood and adolescence. They would learn the names of the diagnoses and treatments, the problems they need to anticipate and avoid, the importance of expert surveillance, career and family planning information, and appropriate self-management. The second solution would be to encourage an orderly transfer of patients from paediatric to adult practice, usually at about 18 years of age, and at the time of graduation from high school. Clinics for adults with congenital cardiac disease depend upon multidisciplinary collaboration with specialties in areas such as congenital cardiac imaging, diagnostic and interventional catheterization, congenital cardiac surgery and anaesthesia, heart failure, transplantation, electrophysiology, reproductive and high risk pregnancy services, genetics, pulmonary hypertension, hepatology, nephrology, haematology, and others. None of these services are easily available "off the rack", although with time, experience, and determination, these services can develop very well. Facilities with experienced personnel to provide competent care for adults with congenital cardiac disease are becoming increasingly available. Parents and patients should learn that these facilities exist, and be directed to one by their paediatric caregivers when the time comes for transition to adult care. With the steady increase in the number of adults with congenital heart disease, an ever increasing number of women with such disease are becoming pregnant. Services are not widely available to assess competently and plan a pregnancy for those with more complex disease. It is essential to have a close interplay between the obstetrician, the adult congenital cardiologist, the fetal medicine perinatologist, and neonatologist. In both a community based programme and a tertiary care centre, the nuances and complexities of congenital cardiac anatomy, coupled with the high probability of previous operation during childhood, makes the trained congenital cardiothoracic surgeon best suited to deal with the surgical needs of this growing population. It is clear that the majority of adults with congenital heart disease are not "cured", but require lifelong comprehensive care from specialists who have expertise in this complex arena. There is a growing cadre of healthcare professionals dedicated to improving the care of these patients. More information has become available about their care, and will be improved upon in the next decade. With the support of the general paediatric and paediatric cardiologic communities, and of the Adult Congenital Heart Association, and with the persistence of the providers of care for adults with congenital cardiac disease currently staffing clinics, the care of these patients should become more secure in the next decade as we mature our capabilities.

Telepediatric cardiology practice in Canada.

Telemedicine was introduced in Canadian pediatric cardiology practice in 1987 in the Maritime provinces with real-time echocardiography transmissions. This early experience was adopted progressively by other provinces, and, with technological progress, many different applications are now available. Telemedicine has now become an essential tool in providing access to one of the 15 pediatric cardiology centers for the entire Canadian population from coast to coast. This includes teleconsultations and surgical discussions. Additionally, a teleeducation program links all 15 centers for professional education. Indeed, 16 years after its introduction, telemedicine has become as essential component in the delivery of pediatric cardiology. We will likely see further development in this field consistent with technological advances and patient demand as well as expanded networks and newer applications.

Developing an integrative therapies program in a tertiary care cardiovascular hospital.

This article describes one hospital's approach to developing an inpatient integrative therapies program and the foundation for a broader integrative healthcare vision. Since the program's inception, additional evidence has accumulated in the literature supporting the impact of integrative therapies strategies on patients' quality of life during inpatient stays. These findings and our own evaluation processes have encouraged continued program growth. Several elements were critical to the program's success. Review of the literature and investigation of other programs served as preparation before the actual program started. It was necessary to have administrative, nursing, and physician champions who were able to envision the program and see the value of this approach for patients. We appreciated the need for evidence-based outcomes research and demonstrable patient outcomes. Finally, a program manager was hired who was able to understand the culture of the hospital and the organizational change process. Each of these basic steps, which called for interdisciplinary collaboration, allowed us to accomplish the goal of using integrative therapies as adjuncts to conventional medical care and thereby supported an integrative approach. Consistently linking the integrative vision to patient needs and requirements helped us to identify many new avenues to expand upon this work. The process of program development described may be useful to other inpatient cardiovascular programs inclusive of critical care settings. Adaptations of our experience to other populations in critical care and across other hospital settings may be possible.

Cardiac rehabilitation and secondary prevention services in Ontario: recommendations from a consensus panel.

The Cardiac Care Network of Ontario Consensus Panel on Cardiac Rehabilitation and Secondary Prevention drew on the literature and its own expertise, and surveyed existing cardiac rehabilitation and secondary prevention (CR) services in Ontario to make recommendations for the delivery of CR services in Ontario. This report, which is not an official position paper for the Canadian Cardiovascular Society, presents these recommendations. The key recommendations were a regional coordination model for the delivery of CR services that would provide CR close to home and promote access to CR in groups traditionally underrepresented in CR; high quality central data collection; the creation of a provincial CR registry to allow future planning, coordination, monitoring and evaluation of CR services in Ontario; and the establishment of specific CR program funding from the Ontario Ministry of Health and Long Term Care.