Evaluation of a nurse-led multi-component transition program for adolescents with congenital heart disease.

Objective: To evaluate the effectiveness of the transition program for adolescents with congenital heart disease (CHD) 'Transition With a Heart' (TWAH) on disease-related knowledge, quality of life (QoL), transition experiences, and gaps in follow-up.

Methods: A study with pre-posttest and control group (post-test) using consecutive sampling, including adolescents with moderate to severely complex CHD, without intellectual disability, aged≥ 12 y, and parents. After weighting, t-tests were performed.

Preferences for disease-related information and transitional skills among adolescents with congenital heart disease in the early transitional stage.

Purpose: The transition towards adult-focused healthcare comprises a complex process requiring careful, individualized guidance of adolescents with congenital heart disease (CHD). Detailed data on their preferences regarding disease-related information and acquirable transitional skills are mostly lacking. We examined the preferences of CHD adolescents in the early transition stage.

Last year of life of adults with congenital heart diseases: causes of death and patterns of care.

Aims: Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death and (ii) describe the patterns of healthcare utilization in the last year of life of adults with CHD.

Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.

Background: In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal.

Influenza Vaccination in Patients With Congenital Heart Disease in the Pre-COVID-19 Era: Coverage Rate, Patient Characteristics, and Outcomes.

Background: Influenza vaccination is the most commonly recommended immune prevention strategy. However, data on influenza vaccination in patients with congenital heart disease (CHD) are scarce. In this study, our goals were to: (1) measure vaccination coverage rates (VCRs) for influenza in a large cohort of children, adolescents, and adults with CHD; (2) identify patient characteristics as predictors for vaccination; and (3) investigate the effect of influenza vaccination on hospitalization.

Different levels of care for follow-up of adults with congenital heart disease: a cost analysis scrutinizing the impact on medical costs, hospitalizations, and emergency department visits.

Aim: To scrutinize the economic impact of different care levels, such as shared care, in the follow-up of adult congenital heart disease (ACHD) patients.

Methods: The BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC) was analyzed. Patients (N = 6579) were categorized into five care levels based on their cardiac follow-up pattern between 2006 and 2010.

Needs and Experiences of Adolescents with Congenital Heart Disease and Parents in the Transitional Process: A Qualitative Study.

Purpose: Most patients with congenital heart disease (CHD) need lifelong cardiac follow-up. Transitioning to adulthood and transferring to adult-focused care are often challenging. We explored the experiences and needs of adolescents with CHD and parents during the entire transitional process, including the post-transfer period.

Development of a transition program for adolescents with congenital heart disease.

Thanks to advances in care, most children with congenital heart disease nowadays survive into adulthood. The majority of patients remain at high risk for future complications. Hence, life-long follow-up is mandatory.

Opinions of general and adult congenital heart disease cardiologists on care for adults with congenital heart disease in Belgium: a qualitative study.

Background: The growing adult congenital heart disease (CHD) population requires efficient healthcare organisation. It has been suggested that clinically appropriate care be provided for individual patients on the least complex level possible, in order to alleviate saturation of special care programmes.

Methods: Semi-structured interviews with 10 general and 10 adult CHD cardiologists were conducted to elucidate opinions on healthcare organisation in Belgium.

Sexuality of patients with chronic heart failure and their spouses and the need for information regarding sexuality.

Background: Psychological and physiological effects of chronic heart failure (CHF) can influence sexuality. Both CHF patients and their partners may experience changes and have questions about sexuality. Despite this, healthcare professionals give little information regarding sexuality.