Shared decision making and behavioral impairment: a national study among children with special health care needs

Shared decision making (SDM) is defined as the active participation of both clinicians and families in treatment decisions, the exchange of information, discussion of preferences, and a joint determination of the treatment plan [1]. Given benefits of SDM in increasing families’ knowledge, decreasing uncertainty, and pairing families with treatments they find most acceptable [2], the Institute of Medicine (IOM) recently stressed the importance of research assessing the comparative effectiveness of SDM in pediatrics [3] and the 2010 Patient Protection and Affordable Care Act supported the implementation of SDM in clinical settings [4]. Despite the prioritization of research on SDM, little work has investigated the association of SDM with children’s health.

SDM is particularly useful when families must balance the risks and benefits of more than one evidence-based treatment. This process therefore may be especially helpful in the management of behavioral problems since families choose between behavior therapies and medical treatments, often informed by strongly held personal and cultural values. Concerns such as cost, accessibility, stigma, effectiveness, and side effects have been shown to shape these decisions [5]. By addressing families’ preferences, SDM explicitly incorporates values into the decision making process. As a result, beliefs that could undermine treatment acceptability, engagement and adherence may be discussed prior to the selection of therapeutic options and potentially lead to a better match between families and treatments.

Children with special health care needs (CSHCN), those who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally [6], are an ideal population for the study of the impact of SDM on behavioral health. Approximately 10 to 12 million United States (US) children have special health care needs [7], up to 30% of CSHCN have a behavioral or emotional disorder [8, 9], and behavior problems are often more severe among CSHCN than others [10, 11]. Furthermore, even for children without a diagnosed behavioral or mental health condition, the presence of a special health care need often increases the need for mental health services for both affected children and their families [9].

To address these often multi-faceted problems, collaboration between clinicians and families has become a priority for these children. Ensuring “that families partner in decision making at all levels and are satisfied with the services they receive” is one of the Maternal and Child Health Bureau’s 6 core outcomes for CSHCN [12]. Still, little attention has focused specifically on the association of SDM with children’s behavioral health and how patterns of SDM over time may impact behavioral outcomes. To address this knowledge gap and provide guidance for pediatric clinicians who routinely treat behavioral problems, we conducted a longitudinal study of SDM and behavioral health among a national sample of US CSHCN. We hypothesized that both higher mean levels of SDM over time as well as increasing SDM would be associated with improved behavioral health.

In this study, the first national, longitudinal research project examining the association of SDM with behavioral impairment in children, we hypothesized that both higher sustained levels and increasing patterns of SDM would be associated with decreased impairment among CSHCN. While consistent with our hypothesis, study results showed different patterns of SDM may be most beneficial for children with versus without high levels of impairment at baseline. We found that higher mean levels of SDM were associated with improvements among children below the threshold for behavioral impairment, but only an increase in SDM was associated with significantly improved behavioral health among those with impairment. Although prospective study is warranted to more thoroughly detail how SDM impacts behavioral health, these novel results suggest that increases in SDM may be needed to achieve the best outcomes for children with behavioral impairment, while sustained SDM over time may be more effective to help CSHCN with behavior problems that adversely affect families but fall below the impairment threshold.

A possible explanation for these findings may be the distinct types of decisions that pediatric clinicians and families share when children have varying levels of impairment. When children are severely impaired, SDM is likely to focus on starting new medical or behavioral treatments that may result in substantial improvements in behavior. Increasing SDM in this context may maximize the likelihood that these treatments are optimized with input from the family in order to best limit impairment. Sustained SDM, as reflected in the mean, might be less important in this context than increasing SDM specifically when major decisions are reached. In contrast, when behavior problems fall below the impairment threshold, clinicians may instead focus on incremental interventions that make many small improvements over time. In this context, sustained SDM in which families and clinicians jointly address minor difficulties over a period of more than one year may help reduce impairment. Since our findings are novel, further study is needed to better understand and confirm these relationships.

While not directly addressing SDM, the few pediatric interventions designed to improve behavioral health by either fostering communication or the medical home, a broader term including care coordination as well as SDM, have had mixed results. A trial of communication skills training for urban pediatric clinicians led by a psychiatrist and drawing from techniques of family-centered care, family and cognitive behavioral therapy, and family engagement, decreased parent-rated impairment among minority, but not white children with behavior problems [25]. A study of the 2007 National Survey for Children’s Health found that children with ADHD cared for in a medical home were less likely to have difficulties participating in activities or making friends [26]. In a rural area, a program to enhance comprehensive, coordinated care for CSHCN with nurse practitioner home visits, goal setting, and follow-up resulted in improved functioning for the family, but not the child [27].

In the context of mixed findings from these interventions, the benefits of SDM in our results justify prospective study examining the impact of interventions to foster SDM on childhood behavioral health. Extensive research primarily targeting adults has been devoted to developing decision aids, standardized and validated tools specifically created to foster SDM by helping families consider the risks and benefits of specific treatments in the context of their personal values [2]. Decision aid use results in improved decision making, but not consistently improved health outcomes [2]. Unlike decision aids which focus on optimizing individual decisions, the items used in this study assess SDM in the broader context of care which may explain the difference in our findings. Since prior research indicates that improved communication between families at home and their pediatricians is strongly associated with SDM [28] but that SDM occurs inconsistently in clinical encounters with impaired children [29], two types of interventions may be needed: decisions aids to foster SDM within encounters and office-based systems such as expanded telephone hours or patient portals to foster ongoing collaboration and SDM. Office-based staff may also provide outreach to enhance the ongoing shared decision making process.

The longitudinal design of this study allowed us to investigate how patterns of SDM change over time, an area that has received little attention in prior research. We found that 36% of households reported increasing, 37% decreasing, and 27% unchanged SDM. Among possible explanations for these shifts, SDM may increase as families gain experience with different treatment modalities and are better able to participate or may increase or decrease when families switch clinicians and a new partnership develops. Child health status as well as families’ outlook and level of stress, factors known to influence pediatric palliative care decision making [30], may also impact families’ and clinicians’ willingness and ability to participate in SDM.

While this study is the first to use a nationally representative sample to assess the impact of SDM on children’s behavioral health over time, it has several limitations. Although we considered 7 items with face validity based on their correspondence with the definition of SDM [1], additional items might have allowed us to further refine our measure and better assess variability in SDM. SDM has been conceptualized as existing between the extremes of paternalistic decision making by the doctor alone and informed decision making by the patient or family alone [1]. However, our study measure limited us to assessing only extent of family involvement in decision making, not who ultimately made decisions. In addition, we relied on household report as opposed to direct observation of SDM. We could not verify how options were presented. Families also might have been more likely to report increased SDM when their children became less impaired, an association that might have biased our results. Although we adjusted for child health status, a similar construct to impairment, and found no impact on results, this might not have fully accounted for the impact of impairment on reported SDM. Furthermore, while our data set provided a national perspective, we conducted an observational study that used a single measure of behavioral health. Trials are needed to definitively assess how SDM impacts behavior using multiple measures of the process and outcomes. Given limits in our sample size that prevented formal tests of effect modification, these studies should also distinguish the impact of SDM in the general population of CSHCN versus among those with primarily behavioral or physical conditions.

We found that SDM was associated with improved behavioral health for US CSHCN. However, different patterns of SDM were associated with improved behavioral health for children with higher versus lower levels of impairment. These results suggest that increasing SDM may be needed to achieve the best outcomes for children with the greatest behavioral impairment, while sustained SDM over time may be more effective to help CSHCN with behavior problems that fall below the impairment threshold. Prospective research is needed to evaluate the impact of strategies to both augment and sustain SDM for this population.

AF conceived of the study, participated in the design and in planning the analysis, and drafted the manuscript. RL, EA, JG, and CF participated in the design of the study and in planning the analysis. SM performed the statistical analysis and assisted in drafting the manuscript. All authors read and approved the final manuscript.