BACKGROUND: An increasing proportion of pediatric hospital days are attributed to technologydependent children. The impact that a pediatric home care nursing (HCN) shortage has on increasing length of hospital stay and readmissions in this population is not well documented. METHODS: We conducted a 12-month multisite prospective study of children with medical complexity discharging with home health. We studied the following 2 cohorts: new patients discharging for the first time to home nursing and existing patients discharging from the hospital to previously established home nursing. A modified delay tool was used to categorize causes, delayed discharge (DD) days, and unplanned 90-day readmissions. RESULTS: DD occurred in 68.5% of 54 new patients and 9.2% of 131 existing patients. Lack of HCN was the most frequent cause of DD, increasing costs and directly accounting for an average length of stay increase of 53.9 days (range: 4-204) and 35.7 days (3-63) for new and existing patients, respectively. Of 1582 DDs, 1454 (91.9%) were directly attributed to lack of HCN availability. DD was associated with younger age and tracheostomy. Unplanned 90-day readmissions were due to medical setbacks (96.7% of cases) and occurred in 53.7% and 45.0% of new and existing patients, respectively. CONCLUSIONS: DD and related costs are primarily associated with shortage of HCN and predominantly affect patients new to HCN. Medical setbacks are the most common causes of unplanned 90-day readmissions. Increasing the availability of home care nurses or postacute care facilities could reduce costly hospital length of stay.
Efficiency and effectiveness of care coordination depends on a match between the needs of the population and the skills, scope of practice, and intensity of services provided by the care coordinator. There is limited existing literature that addresses the relevance of the APN role as a fit for coordination of care for children with SHCN. The objective of this paper is to describe the value of the advanced practice nurse’s (APN’s) enhanced scope of knowledge and practice for relationship-based care coordination in healthcare homes that serve children with complex special health care needs (SHCN). The TeleFamilies project is provided as an example of the integration of an APN care coordinator in a healthcare home for children with SHCN.
The overarching goal of care coordination is communication and co-management across settings. Children with medical complexity require care from multiple services and providers, and the many benefits of care coordination on health and patient experience outcomes have been documented. Despite these findings, parents still report their greatest challenge is communication gaps. When this occurs, parents assume responsibility for aggregating and sharing health information across providers and settings. A new primary-specialty care coordination partnership model for children with medical complexity works to address these challenges and bridge communication gaps. During the first year of the new partnership, parents participated in focus groups to better understand how they perceive communication and collaboration between the providers and services delivering care for their medically complex child. Our findings from these sessions reflect the current literature and highlight additional challenges of rural families, as seen from the perspective of the parents. We found that parents appreciate when professional care coordination is provided, but this is often the exception and not the norm. Additionally, parents feel that the local health system’s inability to care for their medically complex child results in unnecessary trips to urban-based specialty care. These gaps require a system-level approach to care coordination and, consequently, new paradigms for delivery are urgently needed.
Introduction
The purpose of this study was to evaluate the effect of advanced practice registered nurse (APRN) telehealth care coordination for children with medical complexity (CMC) on family caregiver perceptions of health care.
Method
Families with CMC ages 2–15 (N=148) were enrolled in a three-armed, 30-month randomized controlled trial to test the effects of adding an APRN telehealth care coordination intervention to an existing specialized medical home for CMC. Satisfaction with health care was measured using items from the Consumer Assessment of Healthcare Providers and Systems survey at baseline and after one and two years.
Results
The intervention was associated with higher ratings on measures of the child’s provider, provider communication, overall health care, and care coordination adequacy, compared to controls. Higher levels of condition complexity were associated with higher ratings of overall health care in some analyses.
Discussion
APRN telehealth care coordination for CMC was effective in improving ratings of caregiver experiences with health care and providers. Additional research with CMC is needed to determine which children benefit most from high intensity care coordination.
We propose that, in addition to a primary care medical home, CSHCN-HI benefit from a unique medical home center that can provide sufficient resources and expertise to organize their complex care coordination needs. Medical home centers, designed specifically to manage the care of children with complex high intensity medical and care coordination needs, have the potential to reduce excess health care utilization and improve patient outcomes by providing this group of children with customized, accessible and integrated services.
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