Extension for Community Healthcare Outcomes fetal alcohol spectrum disorder (ECHO FASD): Tele-mentoring program to increase healthcare capacity for FASD diagnosis.

BACKGROUND: Children with fetal alcohol spectrum disorder (FASD) often experience delayed, missed, or incorrect diagnosis due to low FASD awareness and diagnostic capacity. Current strategies to expand awareness and diagnostic capacity are insufficient or impractical. METHODS: This project examined the feasibility of Extension for Community Healthcare Outcomes (ECHO) tele-mentoring to train community clinicians about FASD. Participants attended ten 1-h weekly ECHO sessions that included presentations, vignettes, and discussions. Measurement utilized Bowen's feasibility domains. RESULTS: Robust webpage traffic yielded 19 participants (demand). Fidelity scores, hub team field notes, and participant ratings indicated feasibility based on acceptability, implementation, practicality, and adaptation. Clinicians' knowledge and confidence improved and case-based diagnostic accuracy was high (limited efficacy). CONCLUSIONS: ECHO FASD is a feasible training method that shows promise in increasing diagnostic capacity across many geographic regions.

"I'm Doing My Part, I Just Need Help From the Community": Intervention Implications of Foster and Adoptive Parents' Experiences Raising Children and Young Adults With FASD.

Individuals with fetal alcohol spectrum disorders (FASD) have high rates of health care service utilization. It is vital that health care professionals understand FASD and associated family experiences to strengthen their ability to respond to family needs and tailor family-focused interventions. This study included 24 foster and adoptive parents of children and adults (aged 3-33 years) with FASD. Data were collected via individual interviews and focus groups and analyzed thematically. Consistent with a developmental psychopathology perspective, parents' experiences interacted with the individual (with FASD), family, and broader systems ecological levels. Parents undertook protective actions in an attempt to prevent secondary conditions, support their child and family, and mitigate systems barriers. They also experienced stressors at each level, and stress was increased by protective actions. The overall parenting experience was fueled by a protective parenting attitude. Findings can strengthen family-focused care practices with individuals with FASD and their families and inform novel family interventions.

Family-Driven Goals to Improve Care for Children With Autism Spectrum Disorder.

OBJECTIVES: Constipation and insomnia are not consistently identified and treated in children with autism spectrum disorder (ASD) despite their high prevalence and deleterious impact in this population. To standardize care, a constipation practice pathway and an insomnia practice pathway were previously developed by Autism Treatment Network clinicians. Our objective was to implement and refine these practice pathways in clinical settings. METHODS: Eleven Autism Treatment Network sites participated in a Learning Collaborative (ie, multidisciplinary quality improvement team) and chose to implement either the constipation or insomnia practice pathway in the clinical setting. Families set intervention goals (eg, increase stool frequency, decrease nighttime awakenings) before treatment. Each site began implementation with 1 patient and then increased implementation by factors of 5. Before each increase, the Learning Collaborative evaluated progress and refined the practice pathways. Process improvement was measured primarily by duration until goal attainment and by percentage of families who meet their goals. RESULTS: Across sites, 82 children with ASD and constipation and 101 children with ASD and insomnia were managed. Difficulties with intervention adherence and communication between providers and families were reported and were subsequently improved with parallel refinements to both practice pathways. The most notable modification was incorporating a goal-setting session in which families generated their own intervention goals (ie, family-driven goals). In this quality improvement initiative, 75% of families met at least 1 constipation or insomnia goal, with the median time to improvement being 6 weeks. CONCLUSIONS: By integrating a family-centered approach into the standardization of care, constipation and insomnia practice pathways may improve engagement, adherence, and management of medical conditions in children with ASD.

Use of psychotropic medication in children and adolescents with autism spectrum disorders.

OBJECTIVES: The goal of this study was to examine rates of psychotropic medication use and identify associated child and family characteristics among children and adolescents with autism spectrum disorder (ASD) enrolled in an autism registry maintained by the Autism Treatment Network (ATN). METHODS: The sample, derived from the ATN registry, consists of 2853 children aged 2 to 17 years with diagnoses of ASD supported by Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the Autism Diagnostic Observation Schedule with available data on medication use. As part of initial enrollment in the registry, parents completed questionnaires on current psychotropic medication use, psychiatric and medical conditions, and demographics. RESULTS: Of the 2853 children, 763 (27%) were taking ≥ 1 psychotropic medication; 15% were prescribed 1 medication, 7.4% received 2 medications, and 4.5% received ≥ 3. Among children aged 3 to 5 years, 11% were taking ≥ 1 psychotropic medication; among 6- to 11-year-old children, 46%; and 66% of adolescents aged 12 to 17 years were taking at ≥ 1 psychotropic medication. A parent report of comorbid diagnosis of attention-deficit/hyperactivity disorder, bipolar disorder, obsessive-compulsive disorder, depression, or anxiety was associated with a high rate of use, with 80% receiving ≥ 1 psychotropic medication. Only 15% of children with no comorbid psychiatric disorder were taking psychotropic medication. Psychotropic medication use was also related to sleep and gastrointestinal problems. CONCLUSIONS: The prescription of psychotropic medications in this registry sample is highly related to comorbid psychiatric disorder. Other factors associated with use include medical comorbidities, race, ethnicity, and older age.

Complementary and alternative medicine use in a large pediatric autism sample.

BACKGROUND AND OBJECTIVE: Children and adolescents with autism spectrum disorder (ASD) often use complementary and alternative medicine (CAM), usually along with other medical care. This study aimed to determine associations of ASD diagnostic category, co-existing conditions, and use of medications with use of CAM. METHODS: We used the Autism Speaks Autism Treatment Network patient registry, which collects information on CAM use, medical conditions, and psychotropic medication at enrollment. CAM was categorized as special diets versus "other" CAM; ASD was defined as autism, pervasive developmental disorder (PDD), or Asperger's. Gastrointestinal symptoms, seizure disorders, sleep problems, and medication use were determined from parent report. Child Behavior Checklist (CBCL) scores were used to measure behavioral symptoms. Logistic regression was used to determine associations of diagnostic category, other medical conditions, and medication use with CAM treatments, controlling for demographic characteristics. RESULTS: Of 3413 subjects in the registry as of April 2011, 3173 had complete data on CAM use: 896 (28%) reported any use; 548 (17%), special diets; and 643 (20%), other CAM. Higher rates of CAM use were associated with gastrointestinal symptoms (odds ratio [OR] = 1.88), seizures (OR = 1.58), and CBCL total score >70 (OR = 1.29). Children with PDD (OR = 0.62), Asperger's (OR = 0.66), or using medications (0.69) had lower rates. CONCLUSIONS: Children with ASD use more CAM when they have co-existing gastrointestinal symptoms, seizure disorders, and behavior problems. This study suggests the importance of asking about CAM use in children with ASD, especially those with complex symptoms.

PICUBASICS: an on-line resource for the diagnosis and management of acute illness in children with chronic conditions and disabilities.

Children with disabilities and chronic conditions are more likely than their healthy peers to be admitted to emergency rooms, to be hospitalized, and to require pediatric intensive care. Although many of these admissions are attributable to disease burden, a significant percentage are unscheduled stays for an acute illness that is directly related to a known condition. Such admissions are foreseeable, and therefore may be avoidable. An understanding of typical patterns of events that lead to acute illness in children with chronic conditions might suggest strategies to prevent these illnesses or to minimize the severity of unpreventable illnesses when they occur. When viewed as a marker for avoidable morbidity, an "unanticipated" hospitalization of a child with a chronic condition or disability thus provides an important opportunity for health care quality improvement at the community level.