To our knowledge, this is the first study to examine levels of participation in SDM for children with ADHD and asthma by using a national sample. We found that 66% of households of children overall and 65% of those with a child with ADHD or asthma reported high participation in SDM. The closest parallel to this analysis is work done with the National Survey of Children With Special Health Care Needs (NS-CSHCN). Findings from that survey have indicated that 57% of families of children with special health care needs partner in decision-making and are satisfied with the health care they receive31
and that half of children with autism receive all aspects of family-centered care, a construct that partially overlaps SDM.32
Results from the direct observation of pediatric visits are similar. Discussion of alternatives, risks, and benefits at pediatric acute visits occurred at 58%, 54%, and 69%, respectively, of visits with pediatricians or family practitioners.33
Variability in results between these studies likely reflects differences in the outcomes assessed, their measurement, and the specific study population. Because previous work in pediatrics has revealed that parents want to be involved in treatment decisions, and this involvement may affect both parent satisfaction and the outcomes of care,17,18,34,35
additional work is needed nationally to maximize the involvement of families in decision-making.
This work may be best targeted toward families of the most impaired children. For both ADHD and asthma, we found that significantly fewer families of children with impaired general health or behavioral health had high SDM, and gaps as great as 12.9% were found. Differences of this magnitude were also observed in the National Survey of Children With Special Health Care Needs.31
These gaps may have arisen because families of more severely affected children need increased support with decision-making. Although the American Academy of Pediatrics has emphasized the importance of family-centered care and information-sharing as part of care coordination for children with special health care needs, financial and other barriers to meeting these needs persist and may be reflected in our results.36,37
Our findings underscore the importance of developing feasible approaches to support SDM within the medical home.
Our most striking result is the dramatic impact of open telephone communication on reported SDM. We hypothesized that access to care would be strongly associated with SDM. However, we did not expect to find that telephone communication was much more strongly linked to SDM than the level of difficulty in getting to the usual source of care. For both ADHD and asthma and adjusting for all factors considered, including challenges in reaching the office, families with difficulties contacting their usual source of care by telephone were at least 25.8% less likely to have high SDM than those without difficulty. Because most studies of communication have centered on the clinical encounter, the importance of contact outside of office visits specifically to ongoing SDM has not been reported previously in pediatrics.
These findings, if replicated elsewhere, would lend support for more widespread and simplified reimbursement for telephone care for children with chronic illness, which is a priority of the American Academy of Pediatrics that should improve access to clinicians.38
In addition, although our study addressed telephone communication, the results also may support a broader evaluation of tools to enhance communication. For example, e-mail is an increasingly popular, effective, efficient, and well-accepted approach to information exchange in pediatrics; however, its impact on the decision-making process for children with chronic illness remains poorly understood.39–41
The same holds true for patient portals tied to electronic health records, which are tools that have attracted increased attention and are capable of supporting decision-making.
We found no association between demographic characteristics and participation in SDM. Although racial discordance between clinicians and patients has been associated with physician-patient interaction in the adult setting,42
race, as in our study, was not found to be an important factor in a study specifically focused on children’s primary health care.42,43
The impact of socioeconomic status, including parental education and the child’s insurance coverage, on participation in SDM was likely blunted by the requirement that everyone in our study population had a usual source of care. Less than 3% of the study population with asthma or ADHD had no health insurance. Corresponding with our results, the results of previous research across adult health settings have also suggested that the clinical context may be more important than the educational attainment of parents in determining who actively participates in health care.44
Because previous studies have been limited to examining SDM in the context of office visits and in specific practice settings, this study was designed to characterize patterns of SDM and factors associated with SDM in a nationally representative sample of children with ADHD or asthma. Additional strengths of this study included multiple items within the MEPS that correspond to the most widely accepted conceptualization of SDM.1
To address the absence of a validated measure of SDM in the MEPS, we implemented latent class analysis to rigorously identify and match children to distinct patterns of SDM on the basis of responses to available items. Although these items correspond to the 4 components of SDM, additional items exploring whether providers elicited families’ preferences, concerns, and information needs may have allowed us to better characterize patterns of SDM. In our analysis, we considered responses along a spectrum of low to high SDM. However, we were unable to formally distinguish whether the clinician, patient/family, or both ultimately made decisions. In addition, although data on clinician characteristics would have been helpful in studying SDM,45
we were unable to include these factors because most households did not identify a single clinician as the medical provider for the child. Although results were consistent with those from the direct observation of pediatric visits, we considered reported as opposed to observed SDM. As a result, although parents reported on whether clinicians presented all options, we could not verify how many treatment options were presented. Finally, because we conducted a cross-sectional study, we were able to show associations but not causality.