Designing eHealth interventions for children with complex care needs requires continuous stakeholder collaboration and co-creation.

Objective: Hospital-to-home (H2H) transitions challenge families of children with medical complexity (CMC) and healthcare professionals (HCP). This study aimed to gain deeper insights into the H2H transition process and to work towards eHealth interventions for its improvement, by applying an iterative methodology involving both CMC families and HCP as end-users. Methods: For 20-weeks, the Dutch Transitional Care Unit consortium collaborated with the Amsterdam University of Applied Sciences, HCP, and CMC families. The agile SCREAM approach was used, merging Design Thinking methods into five iterative sprints to stimulate creativity, ideation, and design. Continuous communication allowed rapid adaptation to new information and the refinement of solutions for subsequent sprints. Results: This iterative process revealed three domains of care - care coordination, social wellbeing, and emotional support - that were important to all stakeholders. These domains informed the development of our final prototype, 'Our Care Team', an application tailored to meet the H2H transition needs for CMC families and HCP. Conclusion: Complex processes like the H2H transition for CMC families require adaptive interventions that empower all stakeholders in their respective roles, to promote transitional care that is anticipatory, rather than reactive. Innovation: A collaborative methodology is needed, that optimizes existing resources and knowledge, fosters innovation through collaboration while using creative digital design principles. This way, we might be able to design eHealth solutions with end-users, not just for them.

Long Stay and Frequent Readmission in the Pediatric Intensive Care in The Netherlands; 15-Year Time Trends.

To describe time trends and the burden of long-stay patients (LSP) and frequent-readmission patients (FRP) in the PICUs in The Netherlands. DESIGN: Retrospective analysis of data from the nationwide Pediatric Intensive Care Evaluation registry including all PICU admissions in The Netherlands. SETTING: All PICUs in The Netherlands. PATIENTS: All PICU patients less than 18 years old admitted between 2003 and 2017. Two groups of patients were identified: LSP (admitted ≥30 d) and FRP (≥3 readmissions within the first year after their first admission). INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 47,424 children were admitted on 59,759 occasions. LSP (3.3% of total cohort) and FRP (2.1%) accounted for 37.5% and 14.5% of cumulative admission days, respectively. Patients fulfilling both LSP and FRP criteria (0.6%) accounted for 9.9% of cumulative admission days. No significant time trends were observed between 2003 and 2017 for the number of LSP and FRP, nor for accounted cumulative admission days. Age and disease severity-adjusted mortality was significantly higher for LSP (odds ratio [OR], 2.16; 95% CI, 1.66-2.82; p < 0.001) and FRP OR 1.40 (95% CI, 0.97-2.01; p = 0.069) compared with the general PICU population. Overall PICU mortality decreased significantly between 2003 (6.5%) and 2017 (3.7%; p = 0.004), but remained constant over time for both LSP (17.2%) and FRP (6.3%). CONCLUSIONS: The proportion of LSP and FRP and their burden on PICU capacity are considerable and remained constant between 2003 and 2017. Whereas age and disease severity-adjusted mortality decreased in the general PICU population, it did not change in LSP and FRP.

Prognostic factors influencing parental empowerment after discharge of their hospitalized child: A cross-sectional study.

PURPOSE: There is a growing number of children with medical complexity (CMC). After hospitalization, care often has to be continued at home, making transitional care very important. However, many parents do not feel empowered in their role as caregiver for the child. To move forward in this field, we explored prognostic factors associated with parental empowerment after discharge of hospitalized children. DESIGN AND METHODS: In a cross-sectional study, we collected data on potential prognostic factors found in the literature and on parental empowerment by means of the Family Empowerment Scale (FES). Linear regression analyses were performed to explore the associations between the prognostic factors and the FES. RESULTS: Data from 228 patients and their parents were analyzed. Out of twelve factors included in the study, three showed significant associations with parental empowerment. Parents of CMC felt more empowered compared to parents of children with less complex conditions (ß = 0.20, p = 0.00). We found a positive association between the age of the child and parental empowerment (ß = 0.01, p = 0.00). Employed couples felt more empowered compared to unemployed couples (ß = 0.30, p = 0.00). These three variables explained 11% of variance in the FES scores. CONCLUSIONS: Parental empowerment is associated with the patient's age, child's medical complexity, and parental employment status. PRACTICE IMPLICATIONS: Attention should be paid to the discharge preparation of parents of children with less medical complexity. Awareness is required for parents of younger children and parental employment status, because they are at risk for lower parental empowerment.

Clinical features differ substantially between Caucasian and Asian populations of Marfan syndrome.

BACKGROUND: Prevention of aortic dissection and sudden death in patients with Marfan syndrome (MFS) requires accurate diagnosis. MFS is diagnosed by the Ghent criteria, which are primarily based on clinical features of Caucasian MFS populations. We determined whether the Ghent criteria apply to Asian MFS populations. METHODS AND RESULTS: In this multicenter study, we included 255 adult MFS patients according to the Ghent criteria of 2010. Patients were excluded if they were neither Caucasian nor Asian. The Asian MFS population (n=49) had a smaller body surface area (BSA: 1.8 m² vs. 2.0 m², P<0.001), a more severely affected aortic root (absolute aortic diameter: 42.9 mm vs. 43.3mm, P=0.802; corrected for BSA: 24.9 mm vs. 21.7 mm, P<0.001; Z-score: 4.5 vs. 3.6, P=0.013), and more often a positive systemic score (75.5% vs. 60.0%, P=0.045), but less frequently ectopia lentis (24.5% vs. 48.1%, P=0.004) compared with the Caucasian population (n=206). CONCLUSIONS: The Ghent criteria do not necessarily apply to Asian MFS populations, resulting in a more severely affected cardiovascular system. This may be related to under diagnosis of MFS by multiple factors, including the use of Z-score, and genetic and racial differences. The Ghent criteria should be adapted for Asian populations in order to accurately diagnose MFS.