The role of patient navigators in improving caregiver management of childhood asthma

Childhood asthma is a significant public health problem in the United States. Barriers to effective asthma management in children include the need for caregivers to identify and manage diverse environmental triggers and promote appropriate use of preventive asthma medications. Although health care providers may introduce asthma treatments and care plans, many providers lack the time and capacity to educate caregivers about asthma in an ongoing, sustained manner. To help address these complexities of asthma care, many providers and caregivers rely on patient navigators (defined as persons who provide patients with a particular set of services and who address barriers to care) (Dohan & Schrag, 2005). Despite growing interest in their value for chronic disease management, researchers and providers know little about how or what benefits patient navigators can provide to caregivers in managing asthma in children. To explore this issue, we conducted a mixed-method evaluation involving focus groups and a survey with caregivers of children with moderate-to-severe asthma who were enrolled in the Merck Childhood Asthma Network Initiative (MCAN). Findings suggest that patient navigators may support children’s asthma management by providing individualized treatment plans and hands-on practice, improving caregivers’ understanding of environmental triggers and their mitigation, and giving clear, accessible instructions for proper medication management. Study results may help to clarify and further develop the role of patient navigators for the effective management of asthma in children. Acknowledgments This research was supported under contract #35635 between the Merck Childhood Asthma Network and RTI International. RTI Press: Research Report Patient Navigators and Childhood Asthma Management 1 RTI Press Publication No. RR-0030-1704. Research Triangle Park, NC: RTI Press. https://doi.org/10.3768/rtipress.2017. rr.0030. 1704 Introduction Childhood asthma is a critical public health problem in the United States (Akinbami, Centers for Disease Control, & Prevention National Center for Health Statistics, 2006; Akinbami et al., 2012; Eder, Ege, & von Mutius, 2006). The condition affects over 6 million children 0 to 17 years of age, and the prevalence of childhood asthma increased steadily at a rate of 1.4 percent annually between 2001 and 2010 (Centers for Disease Control & Prevention, 2013; Moorman et al., 2012). Rates of asthma attacks declined during this time, but only modestly, from 61.7 to 58.3 percent (Moorman et al., 2012). Recent reports on trends of asthma prevalence in children indicate a plateau from 2010 to 2013, though disparities among certain subgroups increased, including increased prevalence for 10-to-17-yearolds, poor children, and children living in the South (Akinbami, Simon, & Rossen, 2016). The findings demonstrate a great need for continued improvement in the management of childhood asthma. Caregivers must often assume the responsibility for managing childhood asthma. Caregivers of children with asthma need to understand the condition, identify and mitigate environmental triggers, and administer treatments appropriately—or help their child in taking these responsibilities. These tasks are difficult to remember, master, and carry out, however, and for these reasons, they are a major source of poor control of asthma (Akinbami et al., 2006; Modi & Quittner, 2006). Health care providers often lack the time or capacity to effectively coach and counsel caregivers in all the aspects of self-management for chronic illnesses like asthma (Wagner et al., 2001). To support the complex needs of chronic disease management, many patients, caregivers, and providers rely on patient navigators (Fischer, Sauaia, & Kutner, 2007; Fowler, Steakley, Garcia, Kwok, & Bennett, 2006; Viswanathan et al., 2009). Patient navigators provide patients with a particular set of services and address barriers to care (Dohan & Schrag, 2005). For asthma, patient navigators work with caregivers and their children to provide health education and to address the various responsibilities of and barriers to asthma management. In a 2010 study on patient navigators for minority and poor asthma patients, patient participants identified better asthma management through informational (education) and instrumental (physical) support that a patient navigator provided (Black et al., 2010). Adding to these perceived benefits, provider participants (nurses and physicians) argued that patient navigators may use knowledge of patients’ environment and social context to improve the effectiveness of asthma care plans. Overall research on patient navigators suggests that these professionals may augment the role of the health care provider, including provision of access to feasible, costeffective, and individualized care for caregivers and children with asthma (Black et al., 2010). The patient navigator’s facilitative function complements the goals of the Affordable Care Act (ACA), including the aim of improving population health and the individual patient care experience at reduced cost (Berwick, Nolan, & Whittington, 2008). Patient navigators may also advance the ACA’s goal of practicing transformation models, such as the use of Patient Centered Medical Homes (PCMHs) and Accountable Care Organizations (ACOs) that emphasize closely managing high-risk patients and engaging them in care decisions, treatment, and discussions about barriers to adherence (Meyers et al., 2010). From 2005 to 2009, the Merck Childhood Asthma Network, Inc. (MCAN) implemented evidencebased interventions to mitigate childhood asthma in five project sites: Chicago, Los Angeles, New York City, Philadelphia, and San Juan, Puerto Rico. All intervention communities had both significant pockets of poverty and high asthma morbidity. Each site had unique evidence-based interventions, and the details of these variations are described elsewhere (Malveaux & Butterfoss, 2011; Viswanathan et al., 2011a). Across all sites, however, interventions included established components for quality asthma care, including (1) education on asthma care; (2) control of environmental factors that affect or trigger asthma (e.g., animal dander, pollens); and (3) pharmacologic therapy (e.g., inhaled corticosteroids) (National Heart Lung and Blood Institute, 2007). 2 Smith et al., 2017 RTI Press: Research Report RTI Press Publication No. RR-0030-1704. Research Triangle Park, NC: RTI Press. https://doi.org/10.3768/rtipress.2017. rr.0030. 1704 Each MCAN project also embraced key elements of successful community-based asthma programs by emphasizing community stakeholder partnerships and addressing or accounting for the physical and social environment (Clark, Lachance, Milanovich, Stoll, & Awad, 2009). Patient navigators were involved in all interventions to facilitate access to high-quality, community-based asthma care and to promote effective self-management. The individuals recruited to the patient navigator position had no formal health background, except in the Los Angeles intervention, which used school nurses. Most patient navigators lived or worked in the targeted communities. They led health education activities (in the clinic, the home, or both), performed environmental assessments of conditions in the home that could trigger or exacerbate asthma symptoms, and linked families to social services and other resources as needed. Despite research documenting the benefits of patient navigators for chronic disease management, we know little about how these benefits are actually realized, including assisting caregivers with asthma management in children (Crocker et al., 2011; Krieger, Song, & Philby, 2015; Krieger, Takaro, Song, Beaudet, & Edwards, 2009; Perez-Escamilla et al., 2015; Rodday et al., 2015). In this study we aim to help explore this issue by complementing MCAN evaluation findings with caregivers’ perceptions of the factors and conditions by which patient navigators support their effective management of their child’s asthma. This study addresses the MCAN initiative key evaluation question: Have MCAN programs improved caregiver knowledge of and positive behaviors toward asthma? And with regard to understanding the process behind these changes in knowledge and behavior, we ask: How has the role of the patient navigator in MCAN interventions supported caregivers’ capacity to (1) mitigate their children’s exposure to environmental triggers and (2) improve medication management? Findings from this study may help to identify key pathways and high-impact points for patient navigators to shape and improve caregivers’ understanding and management of children’s asthma. Methods To investigate how patient navigators may support caregivers’ management of their children’s asthma, we compared caregiver responses to a common survey with findings from caregiver focus groups conducted across MCAN intervention sites. Our goal was to assess the degree to which caregivers effectively addressed environmental triggers and medication management, and then to understand how patient navigators may have influenced these efforts. This approach follows a convergent parallel mixedmethod study design, in which both methods occur concurrently, with the aim of integrating the results in the analyses to more completely understand project outcomes. This mixed-method approach is ideal for the study of complex phenomenon in real-world settings requiring multiple sources and types of data to understand the context of the problem (Creswell & Plano Clark, 2011). Focus Groups A two-member team of independent investigators with knowledge of the MCAN initiative conducted six focus groups across the five MCAN communities. Eligible participants were caregivers (usually parents) of children with moderate-to-severe asthma who were enrolled in the MCAN initiative and who participated in an intervention (or program) in one of the five intervention sites. Program staff