Journal of Pediatric Nursing (2015) 30, e63–e69

Transition to Adult Congenital Heart Disease Care: A Review Laura Hays BSN, RN ⁎ Arkansas Children's Hospital, Little Rock, AR Received 22 August 2014; revised 21 January 2015; accepted 23 January 2015

Key words: Adult congenital heart disease; ACHD; Pediatric transition to adult care; ACHD regional center

The population of adults with congenital heart disease (ACHD) has grown due to recent advances in surgical procedures. The survival rate to adulthood is now more than 95%. This review identifies current recommendations and status of ACHD management and treatment in the United States by examining comprehensive guidelines for management and transition and comparing them to the current state of the science. Successful transition from pediatric to adult care begins during the adolescent years, and prepares patients for management at an ACHD regional center utilizing multidisciplinary teams of ACHD specialists. Advocacy and research needs for the ACHD population persist. © 2015 Elsevier Inc. All rights reserved.

ADVANCEMENTS IN SURGICAL procedures for congenital heart disease (CHD) over the past 40 years have resulted in an increased survival rate to adulthood from 25% to more than 95% (Warnes, 2005). There has been an increase in the median age of patients with complex CHD, as well as an increase in the number of adults with CHD (ACHD) (Marelli, Mackie, Ionescu-Ittu, Rahme, & Pilote, 2007). The American College of Cardiology (ACC) estimated the total number of adults living with CHD in the United States (U.S.) to be approximately 800,000 in 2001, and other investigators have placed their more recent estimates above 1 million (Hoffman, Kaplan, & Liberthson, 2004; Warnes et al., 2008). The significant growth of the ACHD population has created a new population of adult chronic care patients and subset of adult cardiology patients. Strides have been made in the past 20 years to develop a system for transitioning the CHD pediatric population into adult care, but still no formal nation-wide system exists in the U.S. (Webb, 2010). Successful transition programs to adult care with other pediatric chronic disease populations, such as hemophilia, diabetes mellitus, spina bifida, cystic fibrosis, juvenile ⁎ Corresponding author: Laura Hays, BSN, RN. E-mail address: [email protected].

http://dx.doi.org/10.1016/j.pedn.2015.01.025 0882-5963/© 2015 Elsevier Inc. All rights reserved.

rheumatoid arthritis, and sickle cell disease, begin the transition process 5 to 7 years before the young adult is to transfer to primary care with the adult provider (Fernandes et al., 2012; Peter, Forke, Ginsburg, & Schwarz, 2009; van Staa, Jedeloo, van Meeteren, & Latour, 2011). A purposeful transition allows for development of self-management and communication skills in the adolescent patient, parent preparation for allowing the patient to assume responsibility for his/her care, and pediatric and adult practitioner organization of transfer of care (van Staa et al., 2011). Although planned transition remains a shared goal of pediatric cardiologists, Fernandes et al. (2012) found that clinical instability associated with comorbidities of adulthood prompt transition to ACHD care more often than age. The purpose of this review is to identify current recommendations and status of ACHD management and treatment in the U.S. The review encompasses the historical evolution of ACHD management and treatment over the past 2 decades by examining the most comprehensive guidelines for management and transition, and by showing the current state of the science. Healthcare utilization of the ACHD population is examined, and healthcare needs specific to the ACHD population are then considered and contrasted to the

e64 needs of the pediatric CHD population. Finally, ACHD centers nationwide and worldwide are discussed, and opportunities for nursing involvement are highlighted. Future research and interventional needs are noted throughout.

Literature Search A literature search was conducted on PubMed for articles on ACHD. Key search terms and phrases included combinations of ‘adult congenital heart disease’, ‘ACHD’, ‘pediatric transition to adult care’, and ‘ACHD regional center’. Research articles published since 2006 were reviewed by title and excluded if content appeared to be clinically based. A review of abstracts on the remaining articles resulted in retention of 20 articles. Citations in these articles were also screened, adding another 26 sources.

Recommendations The ACC dedicated its annual meeting in Bethesda, Maryland, in 2000 to addressing the needs of adults with congenital heart disease (Webb & Williams, 2001). Although 14 years have passed since the conference, the recommendations stemming from this conference are currently the most comprehensive guidelines for management and transition of ACHD, and many of the goals remain unmet (Webb, 2010). Participants of the 32nd Bethesda Conference delivered five Task Force reports, each focusing on an aspect of ACHD needs. Specific areas examined by each Task Force report are shown in Table 1. The first report served to define and quantify the ACHD population in the U.S., categorizing disease population as complex, moderate, or simple lesions (Warnes et al., 2001). Tables 2, 3, and 4 differentiate among complex, moderate, and simple cardiac lesions according to the committee's designation. Task Forces 2–5 focused on special health care needs of ACHD, including unique medical needs, contraception, pregnancy, exercise tolerance, rehabilitation, and psychosocial issues; the workforce and levels of training needed to treat the growing ACHD population; structures of health care systems to most effectively treat the ACHD population, specifically regional ACHD centers with specialized teams of staff; and access to healthcare and advocacy need (Child et al., 2001; Foster et al., 2001; Landzberg et al., 2001; Skorton et al., 2001). Clinical practice guidelines set forth by the ACC/ American Heart Association (AHA) Task Force in 2008 include the 32nd Bethesda Conference committee recommendations regarding organization of and access to regional ACHD centers, specialized education for cardiovascular specialists in all fields for the treatment and management of ACHD, ACHD population advocacy, and the psychosocial needs of the ACHD population (Warnes et al., 2008).

Provider Education Participants of the 32nd Bethesda Conference called for 3 levels of training in ACHD. Level 1 entails basic exposure with didactic educational materials to enable the provider to

L. Hays Table 1

2000 Bethesda Conference Task Force Reports.

Task Force 1 - Profile of CHD in adult life - Definition and quantification of the ACHD population - Disease categorization of cardiac lesions Task Force 2 - Unique medical needs of ACHD - Contraception - Pregnancy - Exercise tolerance - Rehabilitation - Psychosocial issues Task Force 3 - Provider workforce description - Educational requirements of providers Task Force 4 - Organization of health care systems - Regional ACHD centers - Specialized healthcare teams Task Force 5 - Access to care - Advocacy needs (Webb & Williams, 2001).

competently recognize and facilitate referral of patients with CHD. This level includes training of all medical cardiology fellows and should include material on CHD anatomy, physiology, pathology, genetics, natural history, clinical presentation, and management. Level 1 trainees should also be able to evaluate CHD results of electrocardiography, echocardiography, and cardiac catheterization (Child et al., 2001). Achievement of Level 2 and Level 3 training requires the same training as Level 1 with the addition of 1 to 2 years of hands-on ACHD training. Among the competencies for upper level training are medical, surgical, and postoperative management of CHD; experience with clinical research methodology; and psychosocial aspects of adolescence and

Table 2

Complex Categorization Cardiac Lesions.

Conduits, valved or nonvalved Cyanotic congenital heart (all forms) Double-outlet ventricle Eisenmenger syndrome Fontan procedure Mitral atresia Single ventricle (double inlet or outlet, common or primitive) Pulmonary atresia (all forms) Pulmonary vascular obstructive diseases Transposition of the great arteries Tricuspid atresia Truncus arteriosus/hemitruncus Other abnormalities of atrioventricular or ventriculoarterial connection not included above (i.e., crisscross heart, isomerism, heterotaxy syndromes, ventricular inversion) (Webb & Williams, 2001).

Transition to Care Table 3

Moderate Categorization Cardiac Lesions.

Aorto-left ventricular fistulae Anomalous pulmonary venous drainage (partial or total) Atrioventricular canal defects (partial or complete) Coarctation of the aorta Ebstein's anomaly Infundibular right ventricular outflow obstruction of significance Ostium primum atrial septal defect Patent ductus arteriosus (not closed) Pulmonary valve regurgitation (moderate to severe) Pulmonic valve stenosis (moderate to severe) Sinus of valsalva fistula/aneurysm Sinus venosus atrial septal defect Subvalvar or supravalvar aortic stenosis (except hypertrophic obstructive cardiomyopathy) Tetralogy of Fallot Ventricular septal defect with Absent valve or valves Aortic regurgitation Coarctation of the aorta Mitral disease Right ventricular outflow tract obstruction Straddling tricuspid/mitral valve Subaortic stenosis (Webb & Williams, 2001).

the transition to adulthood (Child et al., 2001). Cardiology fellows in ACHD receive training in cardiac catheterization, angiographic anatomy, hemodynamics, and electrophysiology of ACHD. Providers in ACHD are required to understand not only the anatomy and effects of CHD, but of the comorbidities and other issues that accompany adulthood, including pregnancy, contraception, exercise, and work and employment abilities and issues (Child et al., 2001). The ACC/AHA Guidelines describe the providers' roles as educators in the transition process, emphasizing the importance of using effective communication skills to help build patient autonomy (Warnes et al., 2008).

Table 4

Simple Categorization Cardiac Lesions.

Native disease Isolated congenital aortic valve disease Isolated congenital mitral valve disease (i.e., except parachute valve, cleft leaflet) Isolated patent foramen ovale or small atrial septal defect Isolated small ventricular septal defect (no associated lesions) Mild pulmonic stenosis Repaired conditions Previously ligated or occluded ductus arteriosus Repaired secundum or sinus venosus atrial septal defect without residua Repaired ventricular septal defect without residua (Webb & Williams, 2001).

e65 The 32nd Bethesda Conference Task Force on Workforce Description & Educational Requirements for ACHD Care recommended that a special task force comprised of the American Board of Pediatrics and the American Board of Internal Medicine and facilitated by the American College of Cardiology look at the specific requirements for the amount of adult and pediatric experience required to be eligible to sit for certification examination in ACHD (Child et al., 2001). This collaboration has resulted in the first qualifying examination for the subspecialty ACHD scheduled for 2015 (Webb, Landzberg, & Daniels, 2014). We have also seen the first accredited fellowship programs in the subspecialty of ACHD in 2013 (Webb et al., 2014). Participants of the 32nd Bethesda Conference also recognized the importance of specialized ACHD training for other skilled providers, including cardiac anesthetists, psychologists, social workers, dieticians, and physical and occupational therapists. They called for advanced practice nurses and physician assistants with clinical backgrounds in medical or pediatric cardiology and preferably intensive care unit experience as well (Child et al., 2001). Another recommendation of the 32nd Bethesda Conference committee is the creation of ACHD research fellowships that would allow a fellow to dedicate 75% to 100% of his or her time to research on any aspect of the ACHD population (Child et al., 2001).

Regional ACHD Centers The establishment of regional centers where specialized ACHD care is delivered in coordination with local providers has been proposed as the most effective way to structurally address the clinical needs of the growing ACHD population. Recommendations from the 32nd Bethesda Conference committee included the projected need for approximately one regional ACHD center for every 5 to 10 million person population (Landzberg et al., 2001). Staffing for these regional ACHD centers includes multidisciplinary teams of cardiologists, advanced practice nurses or physician assistants, congenital heart surgeons, cardiac anesthesiologists, and ACHD specialists in imaging and radiology (Landzberg et al., 2001). ACHD regional centers provide management planning and patient counseling in areas of adolescent transition, genetics, obstetrics, rehabilitation, social services, vocational services, and financial issues (Landzberg et al., 2001). A recommendation of the 32nd Bethesda Conference Task Force 4 is that every ACHD patient be seen and evaluated at an ACHD regional center at least once. At that point, a long-term management plan for the patient can be created which will utilize the patient's primary care physician, cardiologist, and the ACHD center as appropriate (Landzberg et al., 2001). A recommendation included in the ACC/ AHA Guidelines is for the use of these regional tertiary centers to offer conferences, support groups, and educational meetings to aid transition for ACHD patients and their families (Warnes et al., 2008).

e66

Special Needs It is important that ACHD patients transition to adult care with a trained ACHD provider who is knowledgeable in the unique medical aspects that accompany CHD in adults (Foster et al., 2001). Common adult comorbidities, such as artherosclerosis, systemic hypertension, hyperlipidemia, abnormal glucose regulation, thyroid disease, psychiatric illness, as well as life events such as pregnancy, present amplified challenges when combined with the already complex physiologies of the ACHD population (Afilalo et al., 2011; Fernandes et al., 2012; Karamlou, Diggs, McCrindle, & Welke, 2011; Kovacs et al., 2009; Ohuchi et al., 2014; Price et al., 2007). In the event of a non-cardiac surgery, special consideration is also needed for surgical and anesthetic management of ACHD patients. It is equally important that patients are well educated on their diagnoses and disease specifics and are able to understand treatment rationales, symptoms of deterioration, and how to manage their disease within the healthcare system (Foster et al., 2001). Because of the vast amount of information involved, transfer of care ideally begins before adolescence and proceeds at a rate within the patients' abilities to comprehend (Foster et al., 2001; van Staa et al., 2011). Recommended strategies to increase information retention include the use of multiple modes of communication, i.e., verbal, printed, and diagrams (Warnes et al., 2008). Psychosocial needs of the adolescent and adult with CHD are vital to address and should include counseling on higher education and vocational interests, as well as reproductive issues, contraception, and genetic implications (Foster et al., 2001). The participants of the 32rd Bethesda Conference recommended the development and testing of tools to screen for psychosocial issues in the transitioning ACHD population (Foster et al., 2001). They acknowledged that available resources to aid with the emotional health of ACHD patients are scarce, and that innovative solutions such as Internet support groups could be considered (Foster et al., 2001). In a systematic review of the literature, Lane, Millane, and Lip (2013) found no published randomized controlled trials through February 2013 examining psychological interventions for the treatment of depression in the ACHD population, including cognitive behavioral therapy, psychotherapy, and ‘talking/counseling’ therapy, revealing a need for research studies in this area.

Patient Advocacy Task Force 5 of the ACC's 32rd Bethesda Conference focused on the role of providers, patients, and families in patient advocacy (Skorton et al., 2001). Included in their recommendations were the development of educational materials, more research to determine economic impact of CHD in the adult population, and advocacy with health insurance companies and legislators.

L. Hays Recent federal legislation to provide universal healthcare through the Affordable Care Act (ACA) included several provisions that will directly benefit the ACHD population and is in part due to advocacy by the American Heart Association (AHA, 2014). The ACA ensures coverage regardless of pre-existing conditions and eliminates lifetime and annual caps on covered services (AHA, 2014). Advocacy by the Adult Congenital Heart Association (ACHA) resulted in the funding of the Congenital Heart Futures Act as an amendment to the ACA. This act appropriated $2 million to the Centers for Disease Control and Prevention (CDC) to develop ACHD population surveillance to specifically look at survival, healthcare utilization, and longer term outcomes (ACHA, 2012).

Healthcare Utilization A recent study reported that the rate of hospitalization frequency for ACHD grew at almost twice the rate of the pediatric CHD population from 1998 to 2010 (O’Leary, Siddiqi, de Jerranti, Landzberg, & Opotowsky, 2013). However, there is little other current statistical data on healthcare utilization in the ACHD population. Mackie, Pilote, Ionescu-Ittu, Rahme, and Maretti conducted a study published in 2007 which reported rates of health care utilization by adults with CHD from 1996 to 2000 in the province of Quebec, Canada. Their data were retrieved from the physicians' claims database and cardiovascular surgeon procedure codes, and showed that adults with CHD, especially severe cardiac lesions, have significantly higher rates of cardiology outpatient care, emergency department use, days in hospital, and days in critical care units than patients in the general Quebec adult population. The researchers grouped patient data according to disease severity classification, which closely followed the classification criteria set forth by the 32nd Bethesda Conference committee with the exception of the defect Tetralogy of Fallot, classified as a severe complex lesion by Mackie et al. and as a moderate lesion under the 32nd Bethesda Conference criteria (Mackie, Pilote, Ionescu-Ittu, Rahme, & Marelli, 2007; Webb & Williams, 2001). The 1-year hospitalization rates per 1000 people for adults with severe cardiac lesions, adults with other cardiac lesions, and the general adult population of Quebec were 354, 208, and 103, respectively (Mackie et al., 2007). The CDC reports that $1.4 billion was attributed to hospitalization costs in 2004 for both pediatric and adult CHD patients in the U.S. (CDC NCBDDD, 2014). These data would indicate that even a small overall reduction in the need for health care utilization by ACHD patients could have significant economic impact. Tested programs to improve the self-management and self-efficacy of ACHD patients are needed to increase perceived health statuses and decrease barriers to selfefficacy, including negative emotional and psychosocial issues that exist with chronic disease (Horner, Liberthson, & Jellinek, 2000; Lane et al., 2013; Negi, Sarkar, Raval,

Transition to Care Pandey, & Das, 2014). Studies have shown correlations between improved self-efficacy and decreased health care utilization in other adult chronic conditions (Lenferink et al., 2013; Lorig & Holman, 2003). More multicenter interventional research has been called for to look specifically at the ACHD population in multiple areas, including factors associated with rates of health care utilization (Khairy et al., 2008), as healthcare utilization is consistently greater in the ACHD population than in both the pediatric CHD population and the general population.

Adult vs. Pediatric Care Patients with CHD have historically been cared for by pediatric cardiologists. As this group ages due to medical and surgical advances, it is important that we have facilities and trained providers to meet the needs of this new population. The need to transition to an adult-focused ACHD center is in part due to the adult-specific comorbidities and psychosocial issues which will exist (Fernandes et al., 2012; May et al., 2014; O’Leary et al., 2013). By necessity, providers for the ACHD population must be trained in CHD as well as in adult internal medicine. Provider maintenance of collaborative relationships with their pediatric CHD counterparts will help to provide essential holistic care to adults with CHD (Fernandes et al., 2012). The Joint Commission Surgical Care Improvement Project (SCIP) is an evidence-based set of recommendations for post-surgical care in adults (Joint Commission, 2013). The aim of SCIP is to reduce postoperative complications through reduction of surgical site infections, venous thromboembolisms, postoperative pneumonias, and cardiac complications (Berenguer, Ochsner, Lord, & Senkowski, 2010). Currently, freestanding children's hospitals are not required to provide data to the Joint Commission under these recommendations for adult surgical procedures performed at their facilities, although the same adult procedures at adult facilities require provision of data. Improved patient outcomes with the SCIP performance measures have been demonstrated at adult facilities where data are available (Berenguer et al., 2010; Nguyen, Yegiyants, Kalloostian, Abbas, & Difronzo, 2008). Mylotte et al. (2014) conducted an exploratory post-hoc cohort and case-control analyses from 1990 to 2005 in Quebec which examined the relationship between treatment at specialized ACHD centers and patient mortality rates. They saw an increase in referrals to specialized ACHD centers after recommendations from both the Canadian Cardiac Society in 1998 and the 32nd Bethesda Conference in 2001, and reported a positive association with reduced ACHD patient mortality and specialized ACHD care with both case-control and cohort studies (Mylotte et al., 2014). Similar positive results were seen in a Swedish study in which researchers looked at postoperative management after surgery in ACHD regional centers (Nozohoor, Gustafsson, Kallonen, & Sjogren, 2012).

e67 Adult-specific care at specialized ACHD centers is associated with reduced patient mortality, and adult facilities which are charged with accountability for SCIP recommendations report improved patient outcomes. These factors, along with the logistical need for facilities and providers for a growing population, underscore the importance of transitional planning for ACHD.

International Perspectives There are 108 self-reported ACHD clinics in the U.S. that participated in the most recent annual International Society for Adult Congenital Heart Disease (2013). Kempny et al. (2013) identified self-declared ACHD centers world-wide based on the measurement of research output from each. They found a significant increase in the total amount of research regarding ACHD published from 1995 to 2011. Their search in PubMed resulted in 129 total articles in 1995 compared to 480 total articles in 2011, an increase of 272% (Kempny et al., 2013). In regard to the number of ACHD regional centers by country, countries in Europe and North America have the highest number of centers overall per 10 million population, with 2.9 centers per 10 million population reported for the U.S. (Kempny et al., 2013). Australia, India, and Japan also have more than one center per 10 million population, with most other countries in Asia, South America, and Africa reporting less than one center per 10 million population. The U.S. led the world in number of research publications from 1995 to 2011 according to Kempny et al.'s study (2013), with 70% of published studies attributed to only 10 countries. A nationwide survey of 138 cardiology departments in Japan regarding the future needs of regional ACHD centers in Japan revealed the perceived need for more fellowship training programs for future cardiologists, as well as opportunities for existing cardiologists to receive basic information about ACHD in order to address the shortage of adult cardiologists who specialize in ACHD, findings that mirror the recommendations of the ACC (Child et al., 2001; Ochiai et al., 2011). While the U.S. is a leader in the number of research publications and number of ACHD regional centers per population, there is still work to be done worldwide in order to adequately meet the physical and psychosocial needs of the ACHD population.

Nursing Implications The presence and influence of nursing has been closely associated with care coordination of the CHD population at all ages. Nurses provide patient education, continuity of care, and collaborate with multiple specialties for the benefit of CHD patients. Advance practice nurse practitioners are members of collaborative teams providing care for CHD patients in acute care and surgical settings and are in a strategic position to play an important role in patient education and anticipatory

e68 guidance in the transitional years of CHD patients (Jalkut & Allen, 2009; O’Brien, 2007). Britain's Hertfordshire Young People's Health Transitional Service advocates the role of a transition nurse coordinator as a key facilitator in the successful transitioning of youth with complex health needs to adult care. These nurse coordinators support the patients from adolescence until age 21 or until 1 year past successful transition to adult care, developing a transition plan for each patient's specific needs (Kelly, 2014). A clinical nurse specialist trained in adolescent counseling to coordinate transition of CHD patients is labeled “the most important role within this transition” by Hudsmith and Thorne (2007, p. 928). Goossens, Fleck, Canobbio, Harrison, and Moons (2013) conducted a sequential quantitative–qualitative study to identify research priorities in ACHD nursing and recommended the development of an international nursing research agenda. In their study, ACHD nurse specialists and researchers participated in a two-round Delphi study in which 21 research topics were rated on level of priority. Resulting research questions were further refined during the qualitative phase of the study. Goossens et al. (2013) reported that the top 5 research priorities for ACHD nursing involve knowledge and education of patients; outcomes of advance practice nursing; quality of life; transfer and transition; and illness experiences and psychosocial issues in the ACHD population. There is ample opportunity for nurses at all skill levels to participate in the transition and care of the ACHD population. Future nursing research will increase our knowledge base, further enhancing effective therapeutic nursing interventions for this population.

Conclusion Advancements in surgical procedures for CHD over the past 40 years have produced a new population of adult chronic care patients with the ACHD population. Purposeful and successful transition from pediatric to adult care includes early education and preparation of the adolescent patient, structurally prepared ACHD regional centers, workforce training of multidisciplinary teams of ACHD specialists, and continued advocacy and research for issues specific to the ACHD population. There has been a significant increase in the total amount of research regarding ACHD in the past 20 years, however longitudinal and other studies are needed as more data becomes available to produce tested interventions to improve the self-management and self-efficacy of ACHD patients with adult-specific comorbidities and psychosocial issues.

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Transition to Adult Congenital Heart Disease Care: A Review.

The population of adults with congenital heart disease (ACHD) has grown due to recent advances in surgical procedures. The survival rate to adulthood ...
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