Health Services Research © Health Research and Educational Trust DOI: 10.1111/1475-6773.12215 RESEARCH ARTICLE
Which Components of Medical Homes Reduce the Time Burden on Families of Children with Special Health Care Needs? Jane E. Miller, Colleen N. Nugent, and Louise B. Russell Objectives. To examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home. Data Sources. 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), a population-based survey of 40,242 CSHCNs. Study Design. NS-CSHCN is a cross-sectional, observational study. We used generalized ordered logistic regression, testing for nonproportional odds in the associations between each of five medical home components and time burden, controlling for insurance, child health, and sociodemographics. Data Collection/Extraction Methods. Medical home components were collected using Child and Adolescent Health Measurement Initiative definitions. Principal Findings. Family-centered care, care coordination, and obtaining needed referrals were associated with 15–32 percent lower odds of time burdens arranging/ coordinating and 16–19 percent lower odds providing health care. All five components together were associated with lower odds of time burdens, with greater reductions for higher burdens providing care. Conclusions. Three of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent. Key Words. Care coordination, children, chronic illness, medical home, family time burden
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; 440
Medical Homes Reduce Family Time Burden
441
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. 2013). 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 particuAddress correspondence to Jane E. Miller, Ph.D., Institute for Health, Health Care Policy, and Aging Research, and the Bloustein School of Planning and Public Policy, Rutgers University, 112 Paterson Street, New Brunswick, NJ 08901; e-mail:
[email protected]. Jane E. Miller, Ph.D., is also with the Bloustein School of Planning and Public Policy. Colleen N. Nugent, Ph.D., and Louise B. Russell, Ph.D., are with the Institute for Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, NJ. Louise B. Russell, Ph.D., is also with the Department of Economics, Rutgers University, New Brunswick, NJ.
442
HSR: Health Services Research 50:2 (April 2015)
lar 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. 2013)? 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-ofpocket 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).
Medical Homes Reduce Family Time Burden
443
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.
DATA AND M ETHODS The 2009–2010 NS-CSHCN is a national, population-based survey of 40,242 CSHCNs conducted as part of the U.S. State and Local Areas Integrated Telephone Survey (MCHB 2012). The response rate was 43.7 percent for the landline sample, 15.2 percent for the cellphone sample, and 25.5 percent overall (MCHB 2012). To be included in the sample, households had to have at least one child with a special health care need (SHCN), as defined by the CSHCN Screener (CAHMI 2009a). Respondents—parents or guardians who were the most knowledgeable in the household about the child’s health and care—were asked whether the child used prescription medications; had elevated service use; had functional limitations; needed special therapies; and had emotional, developmental, or behavioral problems. Children who met one or more of
452
HSR: Health Services Research 50:2 (April 2015)
applies to cases that have the other four components and lack only care coordination. These “all except__” variables isolate cases that have a specifically identifiable combination of medical home components, in contrast to indicators of presence of each component, which include all cases that have the named component regardless of how many or which other components they have. Results of these analyses confirm the importance of the medical home components identified above and show that complete medical homes provide something above and beyond the individual components. As shown in Figure 3, family-centered care, care coordination, and obtaining needed referrals are again the components most strongly associated with time burdens, especially time spent arranging/coordinating care. For instance, families of CSHCN who lacked only care coordination but had the other four medical Figure 3: Adjusted Odds Ratios and 95 percent Confidence Intervals for Associations between Lacking Individual Medical Home Components and Time Burden for Families of Children with Special Health Care Needs, by Type of Time Burden, 2009–2010 NS-CSHCN 3.0
2.5
2.0
1.5
1.0
*
Lacks only personal doctor or nurse (N=773)
Lacks only usual source of care (N=1,266)
Lacks only familycentered care (N=4,251)
Lacks only care (N=4,348)
Lacks only able to obtain needed referrals (N=378)
Has 0 or 1 MH components (N=331)
Has any 2 MH components (N=1,993)
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
Providing
Combined
Arranging
0.5
Has any 3 MH components (N=6,243)
Note. Compared to children with a complete medical home. Based on generalized ordered logistic regressions of each type of time burden, controlling for all variables shown in Table 1 as well as indicators of whether the child has ADHD, allergies, anxiety, arthritis, asthma, autism, behavior problems, blood problems, cerebral palsy, cystic fibrosis, depression, developmental delays, diabetes, Down syndrome, epilepsy, heart problems, intellectual disability, migraines, muscular dystrophy, and traumatic brain injury. Weighted to the population level using weights provided with the NS-CSHCN (MCHB 2012).
Medical Homes Reduce Family Time Burden
445
nition developed and refined by the MCHB in collaboration with national groups coordinated by CAHMI, and asked about a usual source of care, personal doctor or nurse, family-centered care, coordinated care, and obtaining needed referrals (NCHS 2007; CAHMI 2009b). We defined five dummy variables, each indicating the presence of one component; the reference category was lacking that component. In constructing the overall medical home indicator, children whose parents reported that they did not need referrals, care coordination, or family-centered care were classified as having those components. Children for whom all five components were present were classified as having a medical home, those with four or fewer as lacking a medical home. Cases missing information on one or more components were included in a separate “missing” category in regressions. Control Variables The regressions included controls for type of insurance at the time of interview and an indicator of whether those covered at the time of interview experienced insurance gaps in the preceding 12 months (Table 1). Because time burden can vary substantially depending on the child’s condition, we controlled for three summary measures of child’s health shown in Table 1 and defined in Appendix SA2. We also included indicators of whether the child currently had any of 20 specific diagnoses, listed in the figure notes; their prevalence is shown in Table SA3-1. Health status and health conditions were from parental reports. Finally, we controlled for sociodemographic covariates as coded in Table 1. Our analyses include CSHCNs with complete information on the covariates and providing care (N = 37,700), arranging/coordinating care (N = 37,340), and combined time burden (N = 38,029). See Appendix SA2 for information on how missing values were handled. To investigate multicollinearity among covariates, we calculated variance inflation factors (VIFs). Except for “obtained needed referrals” (VIF = 4.05) and “income below 133 percent of the FPL” (VIF = 2.64), all VIFs were less than 2.0, below the cutoff of 2.5 used to identify problematic levels of collinearity (Allison 1999). Statistical Methods To maximize use of available information about time families spent arranging/coordinating or providing care, we used Stata’s gologit3 procedure with
446
HSR: Health Services Research 50:2 (April 2015)
Table 1: Descriptive Statistics on Time Burden and Covariates, 2009–2010 National Survey of Children with Special Health Care Needs N* Time burden Arranging and coordinating care for the child None or 200–300% of FPL >300–400% of FPL Above 400% of FPL or higher Education, imputed High school or less At least some college Number of adults in the household, imputed One Two Three or more Language spoken at home, imputed English Non-English Number of CSHCN in household 1 [index CSHCN only] 1 or more other CSHCN Number of non-CSHCNs in household No non-CSHCNs 1 non-CSHCN 2+ non-CSHCNs Race/ethnicity, imputed Non-Hispanic white Non-Hispanic black Hispanic Other Child’s age (years) 5 or younger 6–11 12–17
%†
9,026 14,886 14,433
26.3 38.5 35.2
2,100 10,047 26,154 44
6.9 27.5 65.5 0.1
8,761 4,921 6,478 5,584 12,601
28.9 14.3 16.2 12.6 27.9
7,639 30,706
30.5 69.5
5,213 25,320 7,812
18.2 62.1 19.7
36,982 1,363
93.6 6.4
30,682 7,663
64.9 35.1
16,581 13,732 8,032
47.5 33.0 19.5
26,792 3,819 4,206 3,528
59.5 16.2 16.5 7.8
6,942 15,069 16,334
20.8 38.6 40.6 Continued
448
HSR: Health Services Research 50:2 (April 2015)
Table 1. Continued N* Child’s sex Male Female Residence Rural Urban Missing
%†
23,010 15,335
59.4 40.6
5,733 20,655 11,957
15.3 74.6 10.1
*Unweighted N. Weighted to the population level using weights provided with the NS-CSHCN (MCHB 2012). The combined measure was calculated from the measures of (1) arranging/coordinating and (2) providing care and categorized as “minimal” (none/