The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).

Over the past 2 decades, bronchiolitis guidelines and quality improvement focused on reducing unnecessary health care services and costs for this common and cumulatively expensive condition.^1-3 Hospitals targeted reducing unnecessary hospitalization and deimplementing unnecessary testing, such as routine nasopharyngeal swab and chest radiography and ineffective treatments, such as bronchodilators and corticosteroids.^1,4 As a priority, hospital care focuses on supportive care, including fluid management, adequate oxygenation, and respiratory support.

The hospital is a high-cost, resource-intensive setting where there is increasing pressure to provide safe and high-quality care efficiently for children.^1,2 Despite the high cost of hospital care, there are still many areas in pediatric hospital care that lack high-quality evidence, including the treatment of children with common conditions and those with complex health care needs.^3,4 Comparative effectiveness research, which aims to determine which clinical and health care delivery strategies are most effective in real-word settings, is important to inform practice, reduce unnecessary practice variation, and improve health outcomes.⁵

OBJECTIVE: The objective of this study was to understand the decision-making experiences, perspectives, and beliefs of parents of children with a neurologic disability around gastrostomy tube-feeding. DESIGN AND METHODS: We conducted a systematic review of qualitative studies to explore the experiences of parents of children with a neurologic disability around gastrostomy-feeding. We searched 5 electronic databases from inception to July 2010. Two authors independently selected articles and extracted data. Concepts and themes relevant to decision-making were constructed by using thematic analysis. RESULTS: Eleven studies were selected in which experiences relevant to decision-making were reported. The decision-making process was characterized by decisional conflict. Concepts important to understanding conflict were categorized under 3 themes: values; context; and process. The value and meaning of feeding by mouth and, in contrast, with a gastrostomy tube was the dominant theme that led to internal distress for parents in decision. Feeding by mouth was seen as an enjoyable activity, an important social process, but also a struggle. Gastrostomy-feeding represented a loss of normality, a sign of disability, and a disruption of maternal nurturing and bonding. Context (child and family characteristics) and process (information sharing and support) modified the decision-making experience. CONCLUSIONS: Values associated with gastrostomy-feeding and feeding by mouth, the context of child and family, and the process of decision-making facilitated by the health care system shape parental experiences and decisional conflict. This framework will help guide interventions, such as patient decision aids, that are aimed at improving parental decision-making.

Objective: To assess the quality of life (QOL) of neurologically impaired children before and after gastrostomy (G) and gastrojejunostomy (GJ) tube insertion. Design: This was a prospective longitudinal study of children with severe neurological impairment who underwent G or GJ tube insertion. At baseline, and at 6 and 12 months after tube insertion, parents rated (1) global QOL and health-related quality of life (HRQOL) using 10 cm visual analogue scales, with 10 representing maximal QOL and (2) HR-QOL using a questionnaire-based measure. Results: Fifty patients, 45 and five of whom underwent G and GJ tube insertion, respectively, were enrolled with a median age of 591 days. Forty-two had a static neurological disorder, and eight had a progressive neurological disorder. The mean weight for age z score increased significantly over time: −2.8 at baseline and −1.8 at 12 months. The mean QOL and HR-QOL scores at baseline were 5.5 and 5.6 out of 10, respectively. There was no significant change in these scores at 6 and 12 months post-tube insertion. Children with a progressive versus a static neurological disorder had a significantly lower QOL over time. Ease of medication administration as well as feeding showed a significant improvement in scores from baseline to 12 months. Parents felt that the G and GJ tube had a positive impact on their child’s health at 6 months (86%) and 12 months (84%). Conclusion: QOL as rated by parents did not increase following insertion of a G or GJ tube in neurologically impaired children. However, parents felt that the tube had a positive impact on their child’s health, particularly with regards to feeding and administration of medications.

OBJECTIVES: To examine the incidence, mortality, and health care use related to neonatal herpes simplex virus (HSV) infection. METHODS: A retrospective longitudinal cohort study using a multistate Medicaid claims database. We identified neonates hospitalized with HSV infection from 2009 to 2015 by using discharge diagnosis codes and managed them for 6 months after discharge. Incidence rates were corrected for the imperfect sensitivity and specificity of thediagnosis codes for identifying HSV infection. RESULTS: Of 2 107 124 births from 2009 to 2015, 900 neonates were identified with HSV infection, with a corrected incidence rate of 4.5 (95% confidence interval [CI]: 4.2–4.8) per 10 000 births. The yearly disease incidence increased by 56%, from 3.4 (95% CI: 2.8–4.2) per 10 000 births (or 1 in 2941 births) in 2009 to 5.3 (95% CI: 4.6–6.1) per 10 000 births (or 1 in 1886 births) in 2015 (P < .001). Of the 900 neonates with HSV infection, 54 (6.0% [95% CI: 4.4%–7.6%]) died during the index hospitalization; there was no increase in the yearly mortality rate. Of the 692 (81.2%) infants with follow-up data, 316 (45.7%) had an emergency department visit, and 112 (16.2%) had a hospital readmission. Total payments at 6 months amounted to $60 620 431, a median of $87 602 per case of neonatal HSV infection. CONCLUSIONS: We observed an increase in neonatal HSV infection incidence over a recent 7-year period in a Medicaid population. Associated health care use and payments were substantial. Public health interventions targeting disease prevention and early diagnosis are needed.