Shared decision making: improving care for children with autism.

We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance navigating the multitude of treatment options. Surveys assessing primary medical care and decision-making processes were developed on the basis of the U.S. Department of Health and Human Service's Consumer Assessment of Healthcare Providers and Systems survey. In May 2009, after pilot testing, we sent surveys to 203 parents of children from ages 3 to 18 with International Classification of Diseases-9 and parent-confirmed autism spectrum disorder diagnoses. The response rate was 64%. Controlling for key demographic variables, parents of children with autism spectrum disorder reporting higher levels of shared decision making reported significantly greater satisfaction with the overall quality of their child's health care (p ≤ .0001). Parents reporting higher levels of shared decision making were also significantly more likely to report receiving guidance on the many treatment options (p  =  .0002) and controversial issues related to autism spectrum disorder (p  =  .0322). In this study, shared decision making was associated with higher parent satisfaction and improved guidance regarding treatments and controversial issues within primary care for children with autism spectrum disorder.

Autism-specific primary care medical home intervention.

Forty-six subjects received primary medical care within an autism-specific medical home intervention ( www.autismmedicalhome.com ) and 157 controls received standard primary medical care. Subjects and controls had autism spectrum disorder diagnoses. Thirty-four subjects (74%) and 62 controls (40%) completed pre and post surveys. Controlling for pre-survey medical home status, subjects had 250% greater odds of receipt of a medical home at the study end compared to controls (p = 0.021). Compared to controls, subjects receiving the intervention reported significantly more satisfaction (p = 0.0004), greater shared decision making (p = 0.0005) and fewer unmet needs (p = 0.067). However, subjects reported no change in family stress (p = 0.204).

Medical homes for children with autism: a physician survey.

BACKGROUND: Primary care physicians can enhance the health and quality of life of children with autism by providing high-quality and comprehensive primary care. OBJECTIVE: To explore physicians' perspectives on primary care for children with autism. METHODS: National mail and e-mail surveys were sent to a random sample of 2325 general pediatricians and 775 family physicians from April 2007 to October 2007. RESULTS: The response rate was 19%. Physicians reported significantly lower overall self-perceived competency, a greater need for primary care improvement, and a greater desire for education for children with autism compared with both children with other neurodevelopmental conditions and those with chronic/complex medical conditions. The following barriers to providing primary care were endorsed as greater for children with autism: lack of care coordination, reimbursement and physician education, family skeptical of traditional medicine and vaccines, and patients using complementary alternative medicine. Adjusting for key demographic variables, predictors of both higher perceived autism competency and encouraging an empirically supported therapy, applied behavior analysis, included having a greater number of autism patient visits, having a friend or relative with autism, and previous training about autism. CONCLUSIONS: Primary care physicians report a lack of self-perceived competency, a desire for education, and a need for improvement in primary care for children with autism. Physician education is needed to improve primary care for children with autism. Practice parameters and models of care should address physician-reported barriers to care.

Complementary alternative medicine for children with autism: a physician survey.

Previous studies suggest over half of children with autism are using complementary alternative medicine (CAM). In this study, physicians responded (n = 539, 19% response rate) to a survey regarding CAM use in children with autism. Physicians encouraged multi-vitamins (49%), essential fatty acids (25%), melatonin (25%) and probiotics (19%) and discouraged withholding immunizations (76%), chelation (61%), anti-infectives (57%), delaying immunizations (55%) and secretin (43%). Physicians encouraging CAM were more likely to desire CAM training, inquire about CAM use, be female, be younger, and report greater autism visits, autism education and CAM knowledge. Physicians were more likely to desire CAM training, inquire about CAM and view CAM as a challenge for children with autism compared to children with other neurodevelopmental and chronic/complex conditions.

A medical home center: specializing in the care of children with special health care needs of high intensity.

OBJECTIVE: Children with special health care needs (CSHCN) benefit from a medical home, however, a subset, those children with high intensity needs, have medical and social service issues beyond the capacity of most primary care practices. We describe a novel medical home center that is designed to meet the needs of children with special health care needs of high intensity (CSHCN-HI). MODEL OF CARE: The medical home center, U Special Kids (USK) is located at the University of Minnesota and affiliated with a tertiary medical center. USK serves CSHCN-HI throughout the state of Minnesota and, because of state supported funding for the program, children have access to the program regardless of their health insurance coverage. The team is expert at gathering an overall perspective of the child's needs, identifying gaps, accessing services and weaving together the plethora of disparate services, agencies and providers. A major goal of this model is to transition care from USK to a primary care medical home within the child's community. Transition is more likely to occur optimally once the child's complex needs are organized, the family is trained, adequate management resources are in place, and the intensity of care coordination needs are reduced. CONCLUSIONS: We propose that, in addition to a primary care medical home, CSHCN-HI benefit from a unique medical home center that can provide sufficient resources and expertise to organize their complex care coordination needs. Medical home centers, designed specifically to manage the care of children with complex high intensity medical and care coordination needs, have the potential to reduce excess health care utilization and improve patient outcomes by providing this group of children with customized, accessible and integrated services.

Pneumococcal meningitis presenting with a simple febrile seizure and negative blood-culture result.

A 12-month-old girl with occult bacterial meningitis presented with a simple febrile seizure. On examination, the patient was alert, interactive, and smiling responsively without meningeal signs, focal neurologic findings, or signs of extreme illness. Her parents were reluctant to allow a lumbar puncture, and the patient was admitted for observation without lumbar puncture. Her fever resolved, and she was playful, had good oral intake, and was discharged 24 hours after admission. Her initial blood-culture result remained negative. Within 24 hours of discharge, the patient had a focal febrile seizure, came back to the hospital, and was found to have meningitis with a penicillin-susceptible, nonvaccine Streptococcus pneumoniae strain 12F.