- Developmental Behavioral Pediatrics
Clinical Assistant Professor, Pediatrics
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.
View details for PubMedID 29616204
Assess differences in parent-reported shared decision making (SDM) based on diagnostic group in a national sample of children with neurodevelopmental disorders (autism spectrum disorder [ASD], cerebral palsy [CP], or Down syndrome [DS]). Assess contribution of medical home and child functional impairment.Secondary analysis of 2009 to 2010 National Survey of Children with Special Health Care Needs explored reports of 3966 children with ASD, CP, or DS. SDM was defined categorically (SDMcat, present or absent) and continuously (SDMcont, score range 0-12). Regression models were adjusted for child/family characteristics, medical home, functional impairment, and diagnostic group.SDMcat and SDMcont were significantly lower in the ASD group (56.7% [95% confidence interval = CI, 53.4-59.9] and mean 8.7 [95% CI, 8.5-9.0]), compared with the CP group (70.5% [95% CI, 63.4-76.7] and mean 9.7 [95% CI, 9.3-10.1]), or the DS group (70.8% [95% CI, 61.2-78.8] and mean 10.0 [95% CI, 9.5-10.4]). In adjusted analyses of SDMcat and SDMcont, SDM was more likely among children with a medical home (adjusted odds ratio 6.6, p < .001, mean = 11.9, and p < .001), and less likely for children with greatest functional impairment (adjusted odds ratio 0.4, p = .002, mean = 10.1, and p = .001). Adjusted analysis of SDMcont also showed differences based on diagnostic group with lower SDMcont scores in the ASD group (mean = 10.1 and p = .005) compared with the DS group.A medical home was associated with higher SDM, whereas greater functional impairment and ASD diagnosis were associated with lower SDM.
View details for DOI 10.1097/DBP.0000000000000242
View details for Web of Science ID 000367826900004
The Patient Protection and Affordable Care Act (ACA) was designed to (1) decrease the number of uninsured Americans, (2) make health insurance and health care affordable, and (3) improve health outcomes and performance of the health care system. During the design of ACA, children in general and children and youth with special health care needs and disabilities (CYSHCN) were not a priority because before ACA, a higher proportion of children than adults had insurance coverage through private family plans, Medicaid, or the State Children's Health Insurance Programs (CHIP). ACA benefits CYSHCN through provisions designed to make health insurance coverage universal and continuous, affordable, and adequate. Among the limitations of ACA for CYSHCN are the exemption of plans that had been in existence before ACA, lack of national standards for insurance benefits, possible elimination or reductions in funding for CHIP, and limited experience with new delivery models for improving care while reducing costs. Advocacy efforts on behalf of CYSHCN must track implementation of ACA at the federal and the state levels. Systems and payment reforms must emphasize access and quality improvements for CYSHCN over cost savings. Developmental-behavioral pediatrics must be represented at the policy level and in the design of new delivery models to assure high quality and cost-effective care for CYSHCN.
View details for PubMedID 25793891
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