Transition to adulthood and transfer to adult care of adolescents with congenital heart disease: a global consensus statement of the ESC Association of Cardiovascular Nursing and Allied Professions (ACNAP), the ESC Working Group on Adult Congenital Heart Disease (WG ACHD), the Association for European Paediatric and Congenital Cardiology (AEPC), the Pan-African Society of Cardiology (PASCAR), the Asia-Pacific Pediatric Cardiac Society (APPCS), the Inter-American Society of Cardiology (IASC), the Cardiac So

Abstract

The vast majority of children with congenital heart disease (CHD) in high-income countries survive into adulthood. Further, paediatric cardiac services have expanded in middle-income countries. Both evolutions have resulted in an increasing number of CHD survivors. Expert care across the life span is necessitated. In adolescence, patients transition from being a dependent child to an independent adult. They are also advised to transfer from paediatrics to adult care. There is no universal consensus regarding how transitional care should be provided and how the transfer should be organized. This is even more challenging in countries with low resources. This consensus document describes issues and practices of transition and transfer of adolescents with CHD, accounting for different possibilities in high-, middle-, and low-income countries. Transitional care ought to be provided to all adolescents with CHD, taking into consideration the available resources. When reaching adulthood, patients ought to be transferred to adult care facilities/providers capable of managing their needs, and systems have to be in place to make sure that continuity of high-quality care is ensured after leaving paediatric cardiology.

Paediatric and adult congenital cardiology education and training in Europe

“…The manpower shortage to care for these patients however remains a major challenge. 16 We hypothesised that the organic evolution of paediatric cardiology and adult CHD is also reflected in fellow training structures, manifested by a significant disparity in training between European countries ranging from formally organised accredited cardiology fellowship (± exit examination), informal but substantial cardiology training (typically without exit examination), to no training. This study aimed to clarify the current status of training of European paediatric, and adult CHD cardiologists determine whether exit examinations are undertaken and what certification is provided in such countries.…”

Emerging adulthood: The ageing problem of congenital heart disease

“…10 Discontinuity also appears to be a particular problem with patients with 'simple' heart defects and those who have previously not required surgical intervention. 11 The impact of discontinuity of care is significant, with patients more likely to present as an emergency to critical care and are at three times the risk of presenting in an acute state requiring urgent surgical or catheter-based intervention. [12][13][14][15][16]…”

“…21 Ideally, this process should start early, and include individualized education and preparation of the adolescent 22 thus leading to empowerment of the patient. 11 Outcomes of transition include aspects such as: maximization of quality of life, self-management of the condition, knowledge around their CHD including medication, attendance at appointments along with avoidance of unnecessary hospitalization. 23…”

“…Rates in America are reported as higher than in Europe, with adult health care systems and the change in insurance status that commonly occur, potential contributors to the higher rates observed 10 . Discontinuity also appears to be a particular problem with patients with ‘simple’ heart defects and those who have previously not required surgical intervention 11 . The impact of discontinuity of care is significant, with patients more likely to present as an emergency to critical care and are at three times the risk of presenting in an acute state requiring urgent surgical or catheter‐based intervention 12–16 …”

“…Transition has been described as ‘a purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child‐centered to adult‐oriented health care systems’ (p. 927) 21 . Ideally, this process should start early, and include individualized education and preparation of the adolescent 22 thus leading to empowerment of the patient 11 . Outcomes of transition include aspects such as: maximization of quality of life, self‐management of the condition, knowledge around their CHD including medication, attendance at appointments along with avoidance of unnecessary hospitalization 23 …”