Bridging the Distance: Improving Support for Rural Children With Special Health Care Needs

Children in rural communities face many challenges in accessing timely and equitable health care.1,2 Children and youth with special health care needs (CYSHCN) who live in rural areas are at particular risk, given the number of visits and interactions with the health care system needed to maintain their overall health and well-being.3,4 Consider the following scenario based on a patient recently cared for by an inpatient general pediatrics team at our hospital.Mary is a 3-year-old child born at 28 weeks’ gestation with a complex medical history including Trisomy 21, chronic lung disease of prematurity, and feeding difficulties with gastrostomy tube (GT) dependence who presented to the emergency department for respiratory distress. Mary and her family are from a rural part of the state and frequently travel hundreds of miles for Mary’s appointments with pediatric subspecialists at our quaternary care pediatric center. This was Mary’s fifth presentation to our emergency department in the past 12 months; each time, she was transferred from the emergency department at a community hospital without a pediatric inpatient unit for chief complaints ranging from GT dislodgement to intolerance of feeds. Her admission was prolonged because of difficulty obtaining home delivery of her new GT supplies and difficulty arranging transport home from the hospital.This story highlights disparities in access to care for CYSHCN in rural communities. In this commentary, we aim to (1) highlight challenges faced by CYSHCN in rural communities, (2) outline strategies for providing these patients with better and more equitable care, and (3) present a call to action for pediatric hospitalists caring for this patient population.The American Academy of Pediatrics defines CYSHCN as “children who (1) have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and (2) require health and related services of a type or amount beyond that required by children generally.”3 Recent national data suggest that more than 1.7 million CYSHCN in the United States live in rural areas, corresponding to 12.6% of all CYSHCN.4 As compared with children without special health care needs, these children are less likely to report receiving care in a high-functioning health care system.4 This may include challenges such as obtaining regular access to home health care and finding appropriate long-term care facilities, which are scarce in most rural areas.5In many ways, our current health care system has set rural families up for failure in caring for CYSHCN. The regionalization of pediatric care has put a focus on having a “medical home” for medically complex children, but often, that home is not a perfect fit.6 Having a quaternary center as a medical home may work well for children in the large urban areas where these centers are typically located but fails to meet the needs of families who live hours away. These families are often forced to either relocate to urban areas or make long trips for frequent appointments or when illnesses or emergencies arise. Recent closures of rural hospitals and pediatric inpatient units nationwide have further limited available options for families of CYSHCN. The number of pediatric inpatient units decreased by 19.1% annually between 2008 and 2018, resulting in an 11.8% annual decrease in pediatric inpatient beds.7 Rural areas are experiencing steeper declines in pediatric inpatient beds compared with their urban counterparts (−26.1% versus −10.0%).7In addition to their medical needs, CYSHCN in rural communities frequently have unmet social needs, such as food insecurity and difficulty paying for transportation or utility bills.8 These needs can be compounded by forgone family income and difficulty maintaining stable employment as a result of time spent providing and coordinating care for their children.1,8One of the biggest challenges cited by rural families of CYSHCN is the number of in-person appointments that their children need.9 Pediatric hospitalists should therefore consider telehealth as an option when helping to arrange posthospitalization follow-up care for families living in rural areas. Studies have shown that telehealth can provide effective health care for CYSHCN in rural settings, reducing caregivers’ time spent away from work, decreasing the need for travel, and perhaps even reducing use of emergency services.2These benefits become more significant as technology advances and additional tools such as remote examination devices can be used to augment video visits.10 Remote patient monitoring (RPM) is a growing tool in pediatric medicine that leverages technology to allow children to stay connected with and transmit health data to their care team from home.11 Robust RPM programs exist for children with congenital heart disease, asthma, and diabetes. There are also RPM programs that aim to support patients’ transition home from the NICU or to provide patients with an additional layer of monitoring during high-risk periods, such as after liver transplantation.11–14Ongoing challenges within the pediatric telemedicine space include limited broadband infrastructure in rural areas, limited reimbursement for telehealth appointments, and legal challenges driven by the fact that each state outlines its own guidelines for telehealth.9 Additionally, regulations around state medical licensure can limit the feasibility of telemedicine interventions in rural areas where the closest children’s hospital is located in another state.15 Despite technological advancements, because of challenges with using remote examination devices and limited disbursement of these devices, many telehealth visits are conducted with a limited physical examination. This could limit the utility of these visits for CYSHCN, who may not be able to precisely articulate symptoms if they have limitations in their expressive language.15Improving health care for CYSHCN in rural areas may also require training and supporting additional rural primary care providers (PCPs). Having rural PCPs as the first point of contact is a cited and frequently used care model for CYSHCN.16 Rural hospitals with pediatric admitting capability can also serve as key touch points for families of CYSHCN, preventing unnecessary and expensive transports and hospitalizations at larger centers for minor illnesses that can be safely cared for more locally.4Many rural pediatricians, however, cite a lack of community with other providers and a lack of resources as primary obstacles to remaining in practice in rural areas, and a higher percentage of these providers report being unwilling or unable to care for CYSHCN.17 Additionally, rural PCPs are often tasked with coordinating care for CYSHCN across multiple health systems, sometimes accessing 3 or more fragmented electronic health record systems just to keep track of their patients’ subspecialty appointments and medical needs.Robust electronic health record information sharing could improve continuity of care across multiple providers and systems, and this must continue to be a priority to streamline and improve the quality of care received by children in rural areas.18 Incentivizing rural pediatric hospitalists with initiatives such as student loan forgiveness and adequate compensation could also help recruit a much needed workforce to these medically underserved areas.Finally, a growing number of pediatric hospitals have implemented social needs screening in the inpatient setting to connect families to resources such as medical–financial partnerships, food banks, and support groups.19,20 Researchers have shown that rural families can benefit from being screened for social needs during hospitalizations and may see the hospital as a launching point for healthy communities.19 In implementing social needs screening and support programs, however, we must ensure that social workers and other members of the care team at hospitals serving large geographic catchment areas are able to identify available and appropriate local resources for families living in rural areas.19 This might require these hospitals to develop partnerships with state Title V Maternal and Child Health Services Block Grant Programs, which provide community-based services for CYSHCN, as well as with rural county public health departments and community-based organizations with expertise in addressing the unique needs of medically complex children in rural communities.As pediatric care continues to advance and the complexity of patients cared for across geographic areas continues to rise, we must consider multidisciplinary solutions that emphasize family-centered care both within and outside the hospital. For rural families of CYSHCN, this means considering families’ strengths, priorities, and challenges when creating care plans. We must think critically about issues such as where their nearest pharmacy might be for specialty or compounded medications, how we might be able to bundle subspecialty appointments in a single day to reduce commuting time and missed workdays, and how we can create emergency care plans that suit each child and family’s individual needs.Improving care for CYSHCN in rural areas will require thoughtful interventions at multiple levels, including prioritizing programs and policies that increase access to telehealth care and RPM, increasing the availability of local primary care providers and pediatric hospitals in rural communities, and ensuring that families in rural areas can receive support for their social needs. Pediatric hospitalists should advocate for health system and policy changes that enhance access to high-quality, convenient, and family-centered health care and to appropriate community-based resources for this patient population.