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

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. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II. APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments. APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD

Long-term outcome after closure of an atrial shunt in patients aged 60 years or older with ischemic stroke: A nationwide, registry-based, case-control study

Background: According to the current guidelines, evidence of the effects of transcatheter closure in patients aged ≥60 years with an atrial shunt and cryptogenic stroke is still limited. Methods: Using Swedish health registries, patients aged ≥60 years who had previously developed a cryptogenic cerebrovascular event and undergone transcatheter closure were identified. Patients with atrial fibrillation were excluded, and the remaining patients were propensity score-matched with patients of the same age and risk profile who had only undergone medical treatment and with controls from the general population. They were then followed up until 2017 (mean period of 7.1 ± 3.9 years). Results: In total, 100 patients of the intervention group were matched with 100 patients of the medical treatment group and with 100 controls and followed up. The hazard ratio for a recurrent ischemic stroke in the intervention group compared with the medical treatment group was 0.8 (95% confidence interval, 0.3–2.1), and that compared with the controls was 2.3 (95% confidence interval, 0.6–8.9). Atrial fibrillation occurred at the same rate in the two treatment groups (odds ratio, 0.8; 95% confidence interval, 0.4–1.7). However, patients in the intervention group developed vascular disease at a lower rate (odds ratio, 0.5; 95% confidence interval, 0.25–0.85). Conclusions: Patients aged ≥60 years with cryptogenic stroke may undergo transcatheter closure of an atrial shunt after thorough screening for other potential causes of stroke. The incidence of vascular disease seems to be mitigated in these patients relative to medically treated patients

Healthcare consumption in congenital heart disease: A temporal life-course perspective following pediatric cases to adulthood

Background: Improvements in diagnosis, intervention, and care of congenital heart disease (CHD) have led to increased survivability and lifelong dependence on healthcare. This study aims to determine the extensiveness of inpatient care episodes across different life-stages and CHD severity compared to matched controls, and to explore how healthcare utilization among pediatric CHD cases have changed over time. Methodology: National registry data was used to conduct a 1:9 matching analysis with age and sex matched controls. Then, Poisson timeseries analysis was used to conduct trend analysis for inpatient healthcare utilization among pediatric cases <18 years of age. Results: Most CHD cases were non-complex (87.3%), with highest hospitalization rates occurring in infancy. Mean number of hospitalizations among complex cases were over twice that of non-complex cases. Also, as age progressed, mean hospitalization for non-complex cases began converging to the control population. In terms of trend analysis within this study period, healthcare utilization increased by 34% among the infant categories, but decreased by 12% and 32% among children between 1-9 years and 10–17 years, respectively. Also, utilization was not trending in one direction substantiating the claim that multiple time periods are required to assess temporal changes within this population. Conclusion: Inpatient healthcare utilization among the CHD population appears to be decreasing over time in most cases, where non-complex cases transitioning to adult care are increasingly converging to the general population. Additionally, this study validates the need to use multiple time-periods when conducting longitudinal studies across the CHD population