Transitional care in young people with congenital heart disease

Congenital heart disease (CHD) is the most common birth defect in newborns, affecting about 9 per 1,000 babies worldwide. It comprises a wide spectrum of anatomical defects of the heart and/or great intrathoracic vessels that have a variable long-term impact on patients’ health status, functionalities, and overall well-being. While CHD was one of the most common causes of infant mortality around the 1960s, about 90% of children with CHD nowadays have the prospect of reaching adult age. Over the past decades, tremendous investments have been made in the care for patients with CHD through the optimization of CHD detection, surgery, and long-term management. However, despite this ameliorated life-expectancy, patients with CHD have a life-time risk for developing life-threatening complications such as heart failure, arrhythmias, pulmonary hypertension, endocarditis, and sudden cardiac death. In order to prevent such serious complications, the provision of life-long follow-up care performed by specialized healthcare professionals at predefined time intervals is recommended by experts. nbsp;nbsp;nbsp;nbsp;nbsp;nbsp;nbsp; Since the life expectancy of patients with CHD increased substantially, CHD became a life cycle disease. Patients have the prospect to reach several phases of life such as adolescence, adulthood, and parenthood. However, in order to address the specific healthcare needs of patients at each of these life stages, age-appropriate care programs are required. During childhood, patients should receive care at specialized pediatric cardiology programs. When reaching adulthood, patients are advised to transfer their follow-up care to adult-focused facilities. Based on the type of heart defects, patients will be recommended to transfer to either adult congenital heart disease (ACHD) programs, non-specialist general cardiology care settings, or shared care programs. Such transfers of care across different healthcare settings require patients to re-adapt themselves to a new context, healthcare team, responsibilities, and requirements. For some patients such handing-off of care could be stressful and be associated with detrimental outcomes. Understandably, these complex transfers of care across settings make patients vulnerable for a discontinuation of their care process. Such discontinuations characterized by exceeding the recommended guideline-based time interval between recommended follow-up visits are called ‘care gapsnbsp;nbsp;nbsp;nbsp;nbsp;nbsp;nbsp; In order to prepare, guide, and support patients for these transfers of care, comprehensive care programs facilitating this transition towards a new life phase, healthcare context, and set of responsibilities is recommended by international experts. Such care programs provide comprehensive care to patients addressing both medical and psychosocial needs of patients. nbsp;nbsp;nbsp;nbsp;nbsp;nbsp;nbsp; As part of this PhD project on transitional care in young people with CHD, a total of eight studies were performed covering two important and highly relevant themes: the importance of life-long care in patients with CHD, and the provision of transitional care in young people with CHD. nbsp;nbsp;nbsp;nbsp;nbsp;nbsp;nbsp; Although it is very important for patient to have regular check-ups of their cardiovascular and overall health status, this PhD demonstrated that care gaps are highly prominent in young people with CHD transferring to adult care. However, when comparing results of different studies from an international perspective, there appeared to be a significant difference in the magnitude of this problem across healthcare systems. Furthermore, important differences were found between the number of young people remaining in pediatric cardiology, discontinuing cardiac follow-up care, or becoming completely untraceable within the healthcare system. Based on a review of the existing scientific literature regarding the problem of care gaps in the overall population of young people diagnosed with a chronic condition, several risk and protective factors were identified. Four categories of determinants were identified: demographics, disease-related characteristics, healthcare services use, and patient’s health behavior. Additional studies are, however, needed to identify other determinants and ultimately develop effective strategies that can prevent patients from experiencing care gaps during life. As young people with CHD develop towards becoming adults, they are supposed to attain a set of skills, insights, attitudes, and health behaviors required in adult life and healthcare. The provision of transitional care as a comprehensive package of interdisciplinary guidance, support, and care is recommended by experts. Patient education on a broad range of CHD-related aspects is recommended as an important component of this transitional care. This PhD clearly demonstrated significant gaps in the knowledge of patient regarding their condition, treatment, preventive measures, and implications of the condition in adult life. This PhD demonstrated that the provision of one structured, tailored education session results in a significant but small improvement of the disease-related knowledge. No improvement of health behaviors was, however, demonstrated in this study. Innovative supplementary interventions aiming to increase patients’ level of disease-related knowledge must be developed and tested in the future. Adolescents typically engage in a more risky lifestyle as part of adolescent experimental behaviors with the use of tobacco, alcohol, and illicit drugs. Since a heart-healthy lifestyle is very important for patients with CHD, educational interventions informing patients about these risks and explain which lifestyle is deemed mandatory. The prevalence of health-compromising behaviors appeared to be fairly low in our sample of more than 400 adolescents with CHD. These data, however, demonstrated a significant increase of experimenting behaviors around the age at which patients generally transfer to ACHD care (i.e., 16 years). This finding indicated a need for actively detecting risky behaviors in patients. This can be done in a valid way by using the HBS-CHD. Altering the health behaviors of young people through the provision of education seemed, however, challenging and rather ineffective. This PhD, however, could not demonstrate a beneficial effect of education on the correction of health risk behaviors of young people with CHD. Future studies are needed in order to investigate if there is a potential effect when patients are exposed to multiple subsequent educational sessions over a longer time span.

Jaar van publicatie:2015

Toegankelijkheid:Open