The medical home concept emerged in the 1960s as a means for improving care for children with special health care needs (CSHCN) (Sia et al., 2004). Since then, policymakers across the health care spectrum have grown increasingly interested in the medical home as a potential model for transforming the health care system (Peikes et al., 2012; Kilo & Wasson, 2010). Patient-centered medical home (PCMH) models typically emphasize care that is personalized, coordinated, and comprehensive and is managed by a health care professional from an accessible location. Some evidence suggests that practices that adopt procedures consistent with a medical home show both improvements in quality of services and cost savings (Peikes et al., 2012; Solberg et al., 2011; Reid et al., 2010; Reid et al., 2009). Studies also suggest that pediatric practices that have implemented components of medical home models provide better care to their patients than those without such components (Cooley et al., 2009; Homer et al., 2008). Overall, many primary care medical societies, payers, providers, and consumer groups endorse the PCMH model (Rittenhouse et al., 2012).
Parents are important stakeholders in the process of implementing medical homes for children, especially CSHCN. Some medical home initiatives, however, may not adequately take parent and family perspectives into account (Zickafoose et al., 2013; Bechtel & Ness, 2010; Berenson et al., 2008). Moreover, a preponderance of existing research emphasizes issues related to correcting financial and systematic inefficiencies, using evidence-based care, and obtaining positive clinical outcomes (Detsky, 2011). Few studies have focused specifically on either strategies for incorporating consumer perspectives into practice transformation or the outcomes resulting from doing so. Given the frequently complex, costly, and long-term health care needs faced by CSHCN, researchers have suggested that particular attention should be paid to these children and their families as the process of transforming practices to medical homes proceeds (for example, Iezzoni, 2013). As PCMHs become a more prevalent pathway for health care delivery system reform, information on parents' perspectives on their expectations for care received at medical homes and their experiences with such care becomes increasingly important. Such information can help ensure that PCMH initiatives are designed and implemented to meet consumers' needs (Detsky, 2011; Bechtel & Ness, 2010).
This report, a study conducted through the Center on Excellence in Disabilities Research and funded by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) at the U.S. Department of Health and Human Services, helps to close this information gap. The study focused on what parents like and want from primary care for children with special needs and how medical home models can meet those wishes. Answers to our study questions help balance a conversation that sometimes overlooks the very individuals who use health care services. We provide information relevant for policymakers and organizations leading PCMH transformation efforts, as well as for practices implementing PCMH models or otherwise seeking to increase patient and family satisfaction with the care they provide.
Specifically, the study addressed the following questions:
How do parents experience and describe the health care they receive from recognized PCMHs?
What do parents value and expect in the primary care they receive for their CSHCN?
How might current conceptualizations of PCMH models be expanded to further benefit CSHCN and their families?
The rest of this report is divided into five sections. In Section II, we briefly describe our research methodology. In Section III, we present findings from discussions with parents of CSHCN receiving primary care at PCMHs. In Section IV, we present the findings from discussions with parents who are leaders at advocacy or governmental organizations. In Section III and Section IV, we identify each finding and discuss the data supporting it, including illustrative quotations. The number of findings and the amount of supporting discussion varies by finding, and reflects the depth and detail of responses provided by participants. Section V summarizes key study findings, and Section VI discusses program and policy implications.