Abstract
Shared decision-making (SDM) is the process by which patients, clinicians, and in pediatrics, parents/caregivers, discuss treatment options, communicate available evidence for or against the different options, share preferences and values, and eventually arrive at a joint decision. This study evaluates the use of a novel, universally applicable, SDM intervention, provided to parents, intended to promote engagement and participation with their child's clinician. Two-arm randomized controlled trial comparing the impact of a SDM-focused intervention prompt to a neutral comparison prompt on perception of SDM participation. Participants included English-speaking parents of children (0-17 years) attending one Developmental-Behavioral Pediatric (DBP) clinic and their child's clinician. Prior to visit start, parents received either the intervention prompt encouraging engagement with the clinician in decision-making, or the comparison prompt reminding them to request a school/work excuse note if needed. After the visit, SDM was assessed by both parents and DBP clinicians. SDM was scored as present if the respondent answered "strongly agree" to all SDM-related items. Logistic regression tested effects of visit, child, parent, clinician characteristics, and intervention group status on parent-reported SDM. Cohen's kappa assessed alignment between parent and clinician perceptions of SDM. Of 88 parents screened, 50 (61%) met eligibility criteria and agreed to participate (intervention n = 26; comparison n = 24). Eligible participants (parents and clinicians) for analysis completed the surveys with no missing data. Overall, SDM was present in 76% of parents and 34% of clinicians. With high rates of parent-reported SDM in both intervention and comparison groups, no main intervention effect was detected. Compared to the comparison group, there was greater alignment between parent and clinician perception of SDM in the intervention group. Parent and clinician enrollment and data collection with minimal loss suggest that this novel approach is easy to use and could be employed in future outpatient studies exploring SDM. In this clinical setting, both intervention and comparison group parents reported high levels of SDM participation and no main group effect was detected. Further study of this novel parent-directed SDM intervention approach is needed in a larger sample with greater variability in parent-reported SDM to determine its efficacy.
Highlights
This study evaluates the use of a novel, universally applicable, Shared decision-making (SDM) intervention, provided to parents, intended to promote engagement and participation with their child’s clinician
Shared decision-making (SDM) is present when all participants share information, communicate preferences, and arrive at a mutually agreed upon treatment plan [1, 2]
Shared decision-making is distinctive in the field of pediatrics, where parents often play an important proxy role in treatment decisions
Summary
Shared decision-making (SDM) is present when all participants (i.e., patients, family members, and clinicians) share information, communicate preferences, and arrive at a mutually agreed upon treatment plan [1, 2]. In the pursuit of quality healthcare, SDM has been linked to increased patient knowledge, decreased decisional conflict, and adherence to treatment recommendations [3, 4]. Subsets of pediatric patients, including those with neurodevelopmental disorders or greater functional impairment, are at high risk for lacking SDM [1, 7,8,9]. Clinical tools for patient/family use, such as decision aids, are one way to augment the SDM process [10]. Decision aids typically require high levels of health literacy, are lengthy, and are narrow in focus. SDM training for clinicians is another common approach to increasing SDM adoption [10]
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