It is a well-known and oft-quoted fact that children with medical complexity represent less than 5% of all children but make up one quarter of all hospitalizations and one half of all hospital costs (10.1542/hpeds.2016-0179), (10.1001/jama.2011.122). Through clinical experience, most hospital-based physicians also likely know that many of these children receive private duty nursing where nurses provide clinical services over extended periods of times or shifts in the home, which is distinguished from skilled nursing visits where nurses may provide brief and focused education on a new technology or diagnosis.
While recent studies have begun to better describe the number of children and families who use home health care services, we must turn to this recently released article by Dr. Foster and colleagues in Hospital Pediatrics(10.1542/hpeds.2018-0282) to learn more about children who are discharged from the hospital with private duty nursing and what their outcomes are over the short- and medium-term. Foster et al. have several important findings. Median hospital length of stay was quite short with, not surprisingly, a long tail of the distribution. Re-hospitalization rates were generally high with 18% of children readmitted within 30 days and half within ~160 days. Twenty-two children (most in palliative care) died during the follow-up period of two years. Hospital charges for these patients were over $130 million with the vast majority driven by unplanned readmissions. Particularly interestingly, the team found that the 188 patients received private-duty nursing from 35 different home health agencies at 44 different sites. Twelve of the agencies only cared for one patient in the research team’s hospital discharge dataset, raising questions about their ability to garner and maintain pediatric expertise. Methodologically, they found that hospital discharge codes present in administrative data missed a number of patients who were discharged with private duty nursing; this has important implications for how we can better understand regional and national estimates of home care use.
Foster et al. important study does have the usual limitations of a single-center study, but it provides impactful data for health services researchers and for physicians who care for children with medical complexity both inside and outside the hospital. It will be exciting to see future research including qualitative research on the experience of private duty nursing care and the transition home, health services research on how these resources could be made more available to all the families that will benefit (which likely is considerably more than received home care), and intervention development on how to improve the transition home, communicate hospital events to the right home-care based team, and ensure that the possible loss of in-home nurses services is not an additional stressor during a child’s hospitalization.
