As a wise mentor first enlightened me years ago, the majority of pediatric health care is not delivered in children’s hospitals or even pediatric clinics but rather in the child’s home environment. Moreover, one of the strongest tenets of the specialty of pediatrics is that children should spend their lives in their home environment to the greatest extent possible. We apply this to all of our patients, from the healthiest to those who are plagued with chronic illnesses. This latter population includes the subset of children with medical complexity (CMC), whose chronic conditions cause significant functional limitations, frequent technology dependence, high health care use, and resultant high costs.1 The “home as much as possible” tenet may be more difficult to follow for these children, yet current technology has made it a realistic goal for caregivers and families to pursue. Despite the frequent reliance on the technology itself, keeping CMC at home often requires direct human assistance, in the form of home nursing personnel who may provide care in brief episodic visits or over a longer time frame via private-duty nursing.
The need for home nursing care (HNC) for CMC is undeniable and has federal support.2,3 But what is less clear is the extent to which it is actually available and provided. Furthermore, it is not clear that CMC in different areas of the United States have the same access to HNC, and where variability exists, there lies the potential for identifying and learning from best practices. Using the Agency for Healthcare Research and Quality’s Healthcare Cost and Utilization Project 2012 Kids’ Inpatient Database (a large multistate, nationally representative database of US hospitalizations for children), Berry et al4 demonstrated significant state-to-state variability in the use of HNC as measured by administrative billing codes for discharge disposition. The group found a slightly higher likelihood of receiving HNC for those covered by Medicaid as opposed to private insurance. Such studies can be used to provide an important beginning but reveal little about the actual quantity of HNC use. An approach to filling that knowledge gap is provided in this month’s issue of Pediatrics by Rasooly et al,5 who assessed the use of HNC among CMC. Using a 4-year commercial data set that included actual payments for services, the team looked at whether patients received any home nursing services within 30 days of a hospital discharge and the number of days of nursing services for those receiving them. They found considerable state-to-state variability in the proportion of patients using any HNC (range of 3.4%–19.2%) as well as variability in the median number of HNC days per recipient (6.6–24.5 days).
The authors of the current study provide new, more detailed information about HNC use after discharge. But as with any good research study, some questions are answered while others arise. In neither previous nor current studies of HNC use do authors distinguish between episodic skilled nursing visits (eg, for a limited-term home IV antibiotic course) versus ongoing, longer-term care (ie, private-duty nursing). Such differences could account for variability in the number of days of home nursing that the authors have identified, although likely would not account for the variability in HNC in general. Furthermore, this distinction would have particularly significant implications for the population of CMC, who are more likely to depend on long-term private-duty nursing.
Local experience suggests that Medicaid provides more robust coverage for HNC than many commercial insurance plans, and data from Berry et al4 suggest this may occur across the broader landscape of the United States. Medicaid may also provide more HNC services overall compared to commercial payers because of the greater percentage of CMC covered by Medicaid.6,7 So, in the current study of commercially insured CMC, the authors provoke the question of whether similar variability exists for patients in state Medicaid programs. That important study remains to be done and would require reversing the masking of state identification that occurs in currently available Medicaid databases. But with 50 separate Medicaid agencies in the United States (plus variation in Medicaid expansion in response to the Patient Protection and Affordable Care Act), there is reason to expect that the variation seen in commercially insured patients is reflected there also.
So, where do we go from here? If we are armed with a future study of HNC coverage by state Medicaid programs, a deeper dive into those states with the best provision of HNC can be done to determine how (and ultimately why) they differ from the lesser performing areas. And while we are at it, it is time to provide a definitive answer to the question of whether providing HNC to our CMC leads to reduced hospitalizations and actually saves money, as providers of pediatric health care suspect. With that information, we could and should continue to lobby policy makers and insurance companies to provide CMC their version of “ruby slippers”: improved HNC availability for our patients and their families.
I thank Dr Elizabeth Pierce for her helpful editorial insights.
Opinions expressed in these commentaries are those of the author and not necessarily those of the American Academy of Pediatrics or its Committees.
FUNDING: No external funding.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2019-2465
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.