Developmental Behavioral Pediatrician Support of the Medical Home for Children with Autism Spectrum Disorders.

OBJECTIVE: To identify challenges primary care providers (PCPs) experience providing a Medical Home for children with autism spectrum disorders (ASDs) and to describe the role developmental behavioral pediatricians (DBPs) play in the Medical Home Neighborhood. METHODS: The authors used purposeful sampling to recruit 25 PCPs from around Colorado to participate in 4 focus groups. Member checking was performed at the end of each group. Sampling continued until themes repeated and saturation was achieved. Focus groups were transcribed verbatim, and transcripts were analyzed using content analysis; an outside reviewer audited the data. RESULTS: Qualitative analysis yielded 30 codes that fell into 7 themes: provider education, shared model of care, initial diagnostic evaluation by the DBP, communication, office factors, cost and coverage, and access. PCPs identified knowledge gaps that led to decreased comfort and desired ongoing education and a centralized resource for providers. They envisioned a shared care model with ongoing specialist collaboration and improved communication within the care team. A specific role desired of the DBP was to provide the initial diagnostic evaluation and treatment plan with specific resources. Office factors, high cost and variable coverage, and poor access to services were barriers to providing a Medical Home for children with ASD. CONCLUSION: Working to remove barriers to shared care as well as providing continued educational opportunities will help improve access to a Medical Home Neighborhood for children with ASD. Advocacy is needed to help remove barriers related to cost, coverage, and access to services.

Differing perceptions regarding quality of life and inpatient treatment goals for children with severe disabilities.

OBJECTIVE: To describe and compare during an acute hospitalization the perceptions of parents, pediatric interns, and pediatric hospitalists regarding the long-term health-related quality of life (HRQoL) of children with severe disabilities when not hospitalized and to identify treatment goals. METHODS: Parents of children with severe disabilities aged 5 to 18 years, as well as the intern and hospitalist caring for the child during acute hospitalizations at a tertiary care center in Salt Lake City, Utah, participated in this study. All participants completed the KIDSCREEN-10 and an investigator-developed survey; a subset was interviewed to qualitatively ascertain perceptions of the child's HRQoL before the current acute illness. Responses were summarized with descriptive statistics and content analysis. RESULTS: We enrolled 115 subjects. Overall, parents rated the HRQoL of their children significantly higher than did either group of physicians on both the KIDSCREEN-10 (37.4 ± 3.9 vs 29.6 ± 5.5, P < .001) and the investigator-developed survey (30.3 ± 5.9 vs 26.3 ± 5.5, P < .001). Parents described the HRQoL of their children more positively and broadly than did physicians. Parents and physicians also expressed different goals for treatment. Parents expressed optimism despite uncertainty regarding their child's future, whereas physicians anticipated increased medical complications and focused on caregiver burden. CONCLUSIONS: Parents of children with severe disabilities rated their children's long-term HRQoL higher than physicians did. Such discrepancies may increase tensions and hinder shared decision-making efforts during acute hospitalizations. Explicit discussions between parents and physicians regarding the HRQoL of children with severe disabilities and treatment goals may facilitate care processes for everyone involved.