Prevalence, Patterns, and Cost of Care for Children with Cerebral Palsy Enrolled in Medicaid Managed Care.

BACKGROUND: In the United States, many children with cerebral palsy (CP) obtain health care coverage through managed Medicaid, but little is known about the current demographics or management of this high-need, complex population. OBJECTIVE: To develop U.S. population-level information about the prevalence of CP, management patterns, and costs. METHODS: Data (2013-2015) were analyzed from a managed Medicaid database with coverage of children and adolescents in 15 states. Analyses included demographic information and use of 10 prespecified CP management options often used to manage spasticity. Code-based algorithms were applied to indicate presence of spasticity and determine the likely ambulatory status. RESULTS: In this claims analysis, the prevalence estimate of CP was 1.78 per 1,000 patients. Most (69.8%) children with CP had spasticity, of which 20.8% had hemiplegia, 15.6% diplegia, 32.9% quadriplegia, and 30.5% CP unspecified. Overall, 42.4% of children with CP were not treated with any of the 10 CP management options via Medicaid. Among treated children, the most common management options were physical therapy (37.1%), orthotics (29.9%), oral baclofen (13.5%) and botulinum toxins (9.4%). Overall annualized Medicaid costs were higher for children with CP versus children in the overall database population ($22,383 vs. $1,358). Within the CP population, costs were higher for those children who were likely nonambulatory than for those who were likely ambulatory ($43,687 vs. $10,368, respectively). CONCLUSIONS: Most children with CP have spasticity, and the costs of care are high. This study highlights wide variation in the way CP is managed, with many young patients not receiving CP management options via Medicaid. DISCLOSURES: This analysis was funded by Ipsen Biopharmaceuticals and conducted by Milliman. Pulgar and Bains were employees of Ipsen Biopharmaceuticals during the conduct of this study. Chambers is a consultant for OrthoPediatrics and an employee of the University of California. Pyenson and Ferro are employees of Milliman, as was Sawhney during the analysis. Gooch, Noritz, and Wright report no conflicts of interest. Part of this work was presented as a poster at TOXINS 2017: Basic Science and Clinical Aspects of Botulinum and Other Neurotoxins, held January 18-21, 2017, in Madrid, Spain.

'Learn From Every Patient': implementation and early results of a learning health system.

AIM: The convergence of three major trends in medicine, namely conversion to electronic health records (EHRs), prioritization of translational research, and the need to control healthcare expenditures, has created unprecedented interest and opportunities to develop systems that improve care while reducing costs. However, operationalizing a 'learning health system' requires systematic changes that have not yet been widely demonstrated in clinical practice. METHOD: We developed, implemented, and evaluated a model of EHR-supported care in a cohort of 131 children with cerebral palsy that integrated clinical care, quality improvement, and research, entitled 'Learn From Every Patient' (LFEP). RESULTS: Children treated in the LFEP Program for a 12-month period experienced a 43% reduction in total inpatient days (p=0.030 vs prior 12mo period), a 27% reduction in inpatient admissions, a 30% reduction in emergency department visits (p=0.001), and a 29% reduction in urgent care visits (p=0.046). LFEP Program implementation also resulted in reductions in healthcare costs of 210% (US$7014/child) versus a Time control group, and reductions of 176% ($6596/child) versus a Program Activities control group. Importantly, clinical implementation of the LFEP Program has also driven the continuous accumulation of robust research-quality data for both publication and implementation of evidence-based improvements in clinical care. INTERPRETATION: These results demonstrate that a learning health system can be developed and implemented in a cost-effective manner, and can integrate clinical care and research to systematically drive simultaneous clinical quality improvement and reduced healthcare costs.

Is there a role for palliative care in progressive pediatric neuromuscular diseases? The answer is "Yes!

The consequences of prolongation of survival can be oversimplified, for example, by equating technologically prolonged survival with indefinitely prolonged high quality of life. When this oversimplified view is embraced, the prognosis of ultimately fatal diseases like DMD may be viewed with unrealistic optimism and palliative care may seem irrelevant or misguided. However, we have shown that the sequelae of prolonged survival are complex. For example, NPPV does not protect prolonged survivors of progressive NMDs from potentially debilitating medical complications that can cause elevated burden of disease, high burden of care, and the potential for impaired quality of life. Also, the sequelae of prolonged survival can negatively affect a wide variety of stakeholders, including patients and their families, medical professionals, and society. It is our view that, when the implications of prolonged survival are examined carefully, their complexity is revealed, and the potential for palliative care to provide support and to relieve suffering in prolonged survivors of progressive NMDs becomes apparent. Thus, we advocate development of an integrative care model for patients with progressive NMDs, blending technological therapies with adoption of palliative strategies as patients approach end of life.