St. Charles Health System (SCHS), PacificSource Community Solutions (PSCS) and Oregon Health & Science University (OHSU), in addition to Central Oregon Pediatric Associates (COPA) and other community organizations, partnered in recognition that there is a subset of pediatric patients with medical complexity, chronic health conditions and special health care needs who are underserved, marginalized and incur a substantial percentage of the allotment of healthcare dollars. Novel Interventions in Children’s Healthcare (NICH) was developed specifically for engaging and effectively serving this patient population in alignment with the Quadruple Aim. Previous evaluations of NICH have found improved disease management, reduced frequency of acute and severe medical complications (e.g., diabetic ketoacidosis), improved care, and reduced medical costs for pediatric patients during and after program involvement. While a recent application of NICH to Central Oregon patients, which included partnering with organizations in the region, demonstrated strong promise in improving youth health, improving care experience, and reducing avoidable healthcare costs. However, this application was relatively small in scope, and did not directly examine/address issues related to overlap with current services as well as issues related to financial sustainability. This project aims to further evaluate the outcomes from this intervention while also more explicitly examining which youth are most likely to benefit, which already existing services may overlap with NICH, and how this program can continue to be financially sustainable in this region.
“NICH saved my type 1 diabetes son’s life – literally. Crystal was amazing and was there whenever we needed her. He would not have survived if it wasn’t for the support, we received through the NICH program. Thank you” - Mother
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- There is a subset of children and adolescents who experience medical complexity, chronic illness and/or special healthcare needs (e.g., type 1 diabetes, cystic fibrosis, end-stage renal disease) and psychosocial vulnerability (e.g., mental health concerns, domestic violence, child abuse, economic insecurity) that create barriers to disease management and result in poor health outcomes and high healthcare costs. These children also tend to experience difficulties in several areas of life (school, peer relationships) and are high risk of poor short- and long-term life outcomes. Coordinated care organizations (CCOs), hospitals, medical teams, and community agencies have developed care coordination models and other support programs to address the needs of this population within the context of health systems transformation. However, a percentage of families and patients, especially adolescents living in poverty, either do not fully engage in or respond to these programs. Although these individuals represent a small percentage of the population, they are often those at greatest risk and incur a disproportionate amount of healthcare and other resources. They typically require more intensive (daily) skills building services that are particularly designed for them to successfully improve health, improve care, and decrease costs in the short- and long-term. The Novel Interventions in Children's Healthcare (NICH) program was specifically designed for this population and includes hiring, training, and intense supervision to effectively serve these youth. The children and adolescents served by NICH make up the top 5% of youth with complex medical conditions who utilize upwards of 48% of pediatric healthcare resources and are also both negatively and disproportionately impacted by the social determinants of health. For example, previous examinations of whether youth in Central Oregon would benefit from such a program demonstrated that 59 Central Oregon children had annual medical costs of over $18,000 in addition to high ED use – and this data did not include pharmacy cost or children with primary behavioral health diagnoses. In addition, since NICH has begun serving youth in the region, 100% of referred families have engaged in care, with many families still awaiting services due to the current team's full caseload.
- This project was implemented by Oregon Health and Science University.
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The project attempted to:-
Determine whether NICH services continue to be acceptable to referred families
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Determine whether NICH services continue to be associated with improvements in youth health and care
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Determine whether NICH services continue to be associated with reductions in healthcare costs
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Determine which youth may be most appropriate for the program in this region by examining moderating characteristics and collaborating with local services/organizations to determine overlap as well as which youth seem to respond to those services in absence of NICH.
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Determine how the program can be financially sustainable in this region
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All referred were enrolled in this program for a 100% engagement rate. Three families were renewed having currently been in the program, and 13 new families were enrolled, for a total of 16.
When looking at 2 years, we saw a 21-34% reduction in days admitted, 45-50% reduction in admissions, 60-80% reduction in PICU stays, 44-53% reduction in ED visits, 50-79% reduction in DKA episodes, and 10-22% improvement in relevant lab values.
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- Both our experienced interventionist and skills trainer left to pursue new career opportunities. Luckily, we were able to promote/hire new staff who have performed admirably since taking over service provision.
- COVID has required us to change how NICH services are delivered and has impacted everyone/all organizations. We are now adapting service delivery efforts to be either in-person or remote depending on institutional, regional, and family factors. We have been increasing the frequency of contact but sometimes losing the ever-important face-to-face home delivery currently. When deemed medically necessary by a child's lead physician, we have attended some meetings using both social distancing, masks, and other precautions. We continue to provide services in the home and community as allowed.
- The impact of COVID, the staff turnover, and the high social risk (and related factors) of this population made it difficult to gather surveys from most families and at most time periods. Although we adapted our surveys to be virtual and translated instruments to Spanish, we continued to have very low rates of survey completion that limited our ability to make firm conclusions about psychosocial changes outside of family anecdotal report and EHR.
- Existing EHR data limited our ability to capture no-shows and cancelations.
We increasingly met with and collaborated with local organizations to better understand service overlap, areas of alignment, shared goals/values, and potential partnerships moving forward.
We identified that there was high acceptance of a program with local providers and champions with a clear role in the continuum of care for local services.
Saw a growth in service appointment attendance over 40 per year per youth.