Our study findings demonstrate that in the seven days prior to hospitalization for management of pediatric respiratory failure, nearly 1 in 2 families contacted a healthcare provider with illness-related concerns. Additionally, during acute medical crisis, children without medical complexity were more likely to contact their primary care provider, whereas parents of children with medical complexity were more likely to contact a specialist provider. These findings have important implications for care delivery for both children without medical complexity and children with medical complexity.
We hypothesize that the influence of medical complexity on the type of provider contacted by parents occurred due to the different logistics of medical care in these patient populations. Most children without medical complexity visit their primary care provider once a year for a well-child examination and the occasional sick visit.7 When children without medical complexity become ill, parents logically reach out to their child’s primary care provider given their established relationship.7 In contrast, children with medical complexity are often followed by several specialists along with a medical home or primary care provider.2,14 Despite the care model that suggests the medical home should be the first contact for all medical concerns, the numerous healthcare providers involved in the care of a CMC could make this less clear for parents. Many children with medical complexity have a prominent chronic system of dysfunction, such as respiratory disease or cardiac disease. As such, these children may follow-up with a specific specialty provider more frequently than their primary care provider. When acute illness concerns occur in that primary area of dysfunction, contacting that specialist could be the most logical provider for a parent to contact. Further, parents may feel that the primary care provider cannot adequately address their concerns about their child’s current illness given their medical complexity.14
Less than half the parents of children without medical complexity contacted a provider prior to hospitalization for severe illness. Several studies have indicated that early contact with a primary care provider is associated with reduced ambulatory care-sensitive admissions.15–17 Ambulatory care-sensitive conditions are conditions where a hospitalization could be prevented when primary care is used appropriately.15–17 While we did not specifically evaluate ambulatory care-sensitive conditions, our data suggests that patients and families could benefit from education on when and how to contact their primary care provider during an acute illness.
With regard to children with medical complexity, it remains uncertain which providers, (primary care or specialists) parents should contact with serious acute illness concerns. In our study, more than 2 out of 3 children with medical complexity had a community-based primary care provider. Due to challenges accessing specialty records or receiving updated documentation from specialists, community-based primary care providers could lack key information to provide medical advice during an acute illness. In contrast, a specialty provider may be unfamiliar with all the varied facets of a child’s complex medical history, which also could impair their ability to provide medical advice during an acute illness. Additionally, specialists may be difficult to contact by phone and may not have clinic availability to evaluate patients on an urgent basis. Nevertheless, as we found that only 50% of families with CMC contacted a healthcare provider, we would encourage families with CMC to reach out to a healthcare provider with acute illness concerns. Based on our findings, we would recommend that children with medical complexity have an acute illness plan as part of a larger comprehensive care plan. Comprehensive care plans, developed by the medical home or primary care provider, have been reported to be significantly helpful in the delivery of care to CMC by helping to ensure coordinated and comprehensive patient care across specialties, institutions, and hospitals.18,19 Specifically, our findings stress the importance of a well-established emergency care plan component to this comprehensive care plan. These plans would detail which symptoms parents should monitor and which health care provider they should call for each specific symptoms. Similar emergency care plans used in children with asthma, Asthma Action Plans, have been well studied and could be helpful in structuring these care plans.20,21
Further research examining whether pre-hospitalization provider contact could prevent hospitalizations or reduce illness severity on hospital presentation is needed. While hospitalization for children with medical complexity may be difficult to prevent due to medical fragility, further investigation could elucidate if emergency are plans and/or optimal pre-hospitalization provider contact reduced the severity of illness on hospital admission and morbidity associated with the hospitalization.
This study had several limitations, including the single-center design, its retrospective nature, and the limited 2-year study period. Additionally, data collection was limited to the EMR which reduces the ability to evaluate health care delivery and resource use patterns not documented in the EMR. In this study, children with medical complexity were defined as those with technology dependence. While technology dependence is a component of the generally accepted definition for children with medical complexity,2 we did not include other components of this definition (congenital or acquired multisystem disease or a severe neurological condition with marked functional impairment) in our definition. Furthermore, this study did not identify social or economic factors that might alter interactions with healthcare providers prior to hospitalization.