Which Components of Medical Homes Reduce the Time Burden on Families of Children with Special Health Care Needs?

Autor: Jane E. Miller, Colleen N. Nugent, Louise B. Russell
Rok vydání: 2014
Předmět:
Zdroj: Health Services Research. 50:440-461
ISSN: 0017-9124
Popis: Patient-centered medical homes (PCMHs) are designed to improve quality of care and reduce costs, especially for patients with complex medical needs, by coordinating care more effectively (Medical Home Initiatives for Children with Special Needs Project Advisory Committee 2002; Barr 2008; Rittenhouse and Shortell 2009). Four medical professional societies organized behind the concept in 2007 and have worked with the National Committee on Quality Assurance (NCQA) to build a program that guides physicians through its implementation (Cassidy 2010; Gray, Weng, and Holmboe 2012). Evaluations of the PCMH have focused on use of medical services (e.g., hospitalizations, emergency room visits), indices of quality (e.g., preventive services, blood pressure control), patient experience and satisfaction, and costs. Results are somewhat mixed, but many studies show lower costs with the same or better quality (Cassidy 2010; Gray, Weng, and Holmboe 2012; Martsolf et al. 2012; Paustian et al. 2014). The time burden that arranging and providing health care imposes on patients and families is another important outcome for those with complex medical needs, but it has received less attention. While the NCQA's definition is widely used, medical homes were first developed for children with special health care needs (CSHCNs) (The Child and Adolescent Health Measurement Initiative [CAHMI] 2009b; Cassidy 2010; Fields, Leshen, and Patel 2010; Laraque and Sia 2010). The Maternal and Child Health Bureau (MCHB) defines CSHCNs as children with chronic physical, developmental, behavioral, or emotional conditions that require medical care beyond that required by children generally (McPherson et al. 1998). The MCHB's definition of a medical home shares themes common to other definitions (e.g., care coordination) but also reflects the need to consider the whole family. Drawing on extensive research led by the Child and Adolescent Health Measurement Initiative (CAHMI), the MCHB developed and refined its definition for use in the periodic National Surveys of Children with Special Health Care Needs (NS-CSHCN), which ask about medical homes’ five components: usual source of care, personal doctor or nurse, family-centered care, coordinated care, and obtaining needed referrals (CAHMI 2009b; National Center for Health Statistics [NCHS] 2007). These items effectively capture the American Academy of Pediatrics definition of medical home (Bethell, Read, and Brockwood 2004). Researchers who study medical homes have drawn attention to variation in their form across settings, which allows medical homes to adapt to particular patients and their needs, but also makes it more difficult to identify exactly what is, or is not, working (Cassidy 2010; Thygeson et al. 2012). Which components are successful? Can they work independently or do all need to be in place to be effective (Paustian et al. 2014)? Identifying the specific services offered, and tasks done, by medical homes might be more informative than treating the concept as an undifferentiated whole. Studies of CSHCNs have found that medical homes are associated with fewer hospitalizations (Cooley et al. 2009), less delayed or foregone care, and fewer unmet needs (Benedict 2008; Strickland et al. 2009; Kuo, Bird, and Tilford 2011; Miller et al. 2013), fewer missed school days (Arauz Boudreau et al. 2012; Katz et al. 2012), and better parental coping with the stress of caring for their child (Arauz Boudreau et al. 2012; Drummond, Looman, and Phillips 2012). Research has also established associations between medical homes and lower risks of several types of family financial burden: out-of-pocket medical costs, additional income needed, and other financial problems (Kuhlthau et al. 2005; Kogan et al. 2008; Kuo, Bird, and Tilford 2011; Katz et al. 2012), family members having to cut back or quit paid employment (Kuhlthau et al. 2005; Kogan et al. 2008; Okumura et al. 2009; DeRigne and Porterfield 2010; Kuo, Bird, and Tilford 2011; Katz et al. 2012), and combinations of those burdens (Viner-Brown and Kim 2005; Kogan et al. 2008). For CSHCNs as for other population groups, however, less attention has been paid to associations between medical homes and families’ time burdens arranging/coordinating or providing health care at home. The time required to arrange and provide medical care for children with disabilities is a stressor for many families, one that could be substantially reduced by medical homes, which are intended to help with locating, arranging, and coordinating services to meet the particular needs of patients and families. Arranging and coordinating care encompasses scheduling appointments, ensuring that the child's primary provider, specialists, and others (e.g., home health aides, physical, speech, or respiratory therapists) are up to date about the child's diagnoses and treatments, and following up on services to address the child's needs (Fields, Leshen, and Patel 2010). In addition, many families provide health care themselves at home, forming what Schuster, Chung, and Vestal (2011) describe as a “shadow health care system,” which includes frequent monitoring and interventions to prevent or manage complications from the child's condition (Leiter et al. 2004). The 2009–2010 NS-CSHCN showed that more than 60 percent of families of CSHCNs devoted at least 1 hour a week to arranging/coordinating or providing health care for the child, and one-sixth spent 11 hours a week or more (U.S. Department of Health and Human Services 2013). Prior research has shown that medical homes are associated with lower odds of combined time burden (arranging and providing care) among children with autism (Kogan et al. 2008). Moreover, some individual medical home components are associated with lower time burdens. Families who reported adequate care coordination had lower odds of spending more than 4 hours per week arranging/coordinating care (Turchi et al. 2009), while family-centered care was associated with lower odds of spending 1 or more hours per week either arranging/coordinating or providing care (Kuo, Bird, and Tilford 2011). However, no association was found between medical homes, or their components, and a composite measure of both types of time among families of children with diabetes (Katz et al. 2012). We used data from the 2009–2010 NS-CSHCN to build on prior studies in several ways. First, we separately analyzed time spent arranging/coordinating and providing health care, rather than only one or a composite of the two. Second, we used generalized ordered logistic regression to estimate the association between medical homes and ordered categories of time spent, rather than a single, binary indicator of time above some arbitrary cutoff, and allowed for nonproportionality in the odds ratios. Third, taking advantage of the fact that the NS-CSHCN asked respondents about each of the five components of medical homes, we estimated the associations between those components and time spent, to identify the specific mechanisms by which medical homes reduce time burdens. Fourth, we controlled for child's health status, insurance, and sociodemographics to estimate medical homes’ effects net of those characteristics.
Databáze: OpenAIRE
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