R. Christopher Sheldrick

Prevalence of Familial Hypercholesterolemia in the 1999 to 2012 United States National Health and Nutrition Examination Surveys (NHANES).

Background— The prevalence of familial hypercholesterolemia (FH) is commonly reported as 1 in 500. European reports suggest a higher prevalence; the US FH prevalence is unknown. Methods and Results— The 1999 to 2012 National Health and Nutrition Examination Survey (NHANES) participants ≥20 years of age (n=36 949) were analyzed to estimate the prevalence of FH with available Dutch Lipid Clinic criteria, including low-density lipoprotein cholesterol and personal and family history of premature atherosclerotic cardiovascular disease. Prevalence and confidence intervals of probable/definite FH were calculated for the overall population and by age, sex, obesity status (body mass index ≥30 kg/m2), and race/ethnicity. Results were extrapolated to the 210 million US adults ≥20 years of age. The estimated overall US prevalence of probable/definite FH was 0.40% (95% confidence interval, 0.32–0.48) or 1 in 250 (95% confidence interval, 1 in 311 to 209), suggesting that 834 500 US adults have FH. Prevalence varied by age, being least common in 20 to 29 year olds (0.06%, 1 in 1557) and most common in 60 to 69 year olds (0.85%, 1 in 118). FH prevalence was similar in men and women (0.40%, 1 in 250) but varied by race/ethnicity (whites: 0.40%, 1 in 249; blacks: 0.47%, 1 in 211; Mexican Americans: 0.24%, 1 in 414; other races: 0.29%, 1 in 343). More obese participants qualified as probable/definite FH (0.58%, 1 in 172) than nonobese (0.31%, 1 in 325). Conclusions— FH, defined with Dutch Lipid Clinic criteria available in NHANES, affects 1 in 250 US adults. Variations in prevalence by age and obesity status suggest that clinical criteria may not be sufficient to estimate FH prevalence.

Improving Parenting Skills for Families of Young Children in Pediatric Settings: A Randomized Clinical Trial

IMPORTANCE Disruptive behavior disorders, such as attention-deficient/hyperactivity disorder and oppositional defiant disorder, are common and stable throughout childhood. These disorders cause long-term morbidity but benefit from early intervention. While symptoms are often evident before preschool, few children receive appropriate treatment during this period. Group parent training, such as the Incredible Years program, has been shown to be effective in improving parenting strategies and reducing childrens disruptive behaviors. Because they already monitor young childrens behavior and development, primary care pediatricians are in a good position to intervene early when indicated. OBJECTIVE To investigate the feasibility and effectiveness of parent-training groups delivered to parents of toddlers in pediatric primary care settings. DESIGN, SETTING, AND PARTICIPANTS This randomized clinical trial was conducted at 11 diverse pediatric practices in the Greater Boston area. A total of 273 parents of children between 2 and 4 years old who acknowledged disruptive behaviors on a 20-item checklist were included. INTERVENTION A 10-week Incredible Years parent-training group co-led by a research clinician and a pediatric staff member. MAIN OUTCOMES AND MEASURES Self-reports and structured videotaped observations of parent and child behaviors conducted prior to, immediately after, and 12 months after the intervention. RESULTS A total of 150 parents were randomly assigned to the intervention or the waiting-list group. An additional 123 parents were assigned to receive intervention without a randomly selected comparison group. Compared with the waiting-list group, greater improvement was observed in both intervention groups (P < .05). No differences were observed between the randomized and the nonrandomized intervention groups. CONCLUSIONS AND RELEVANCE Self-reports and structured observations provided evidence of improvements in parenting practices and child disruptive behaviors that were attributable to participation in the Incredible Years groups. This study demonstrated the feasibility and effectiveness of parent-training groups conducted in pediatric office settings to reduce disruptive behavior in toddlers. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT00402857.

Quality of life in adolescents with autism spectrum disorders: reliability and validity of self-reports.

Purpose: This study examined the reliability and validity of self-reported quality of life (QoL) among adolescents with autism spectrum disorders (ASDs) but without mental retardation (IQ >70) using a validated QoL measure, Pediatric Quality of Life Inventory. Secondarily, the self-reported QoL of adolescents with ASDs was compared with published normative data. Methods: Thirty-nine adolescents with ASDs and their parents completed a QoL instrument and brief measures of psychosocial distress and self-esteem. A screening test of cognitive abilities was administered to adolescents; parents completed an assessment of behavioral and emotional symptoms and an assessment of the presence and extent of autistic social impairments. Results: Adolescent self-reports of QoL demonstrated internal reliability and concurrent validity. Self-reports on the Pediatric Quality of Life Inventory demonstrated moderate to large positive correlations with a measure of self-esteem and moderate to large negative correlations with measures of anxiety and mood. Concurrent validity with parent proxy reports fell within the range of expected values based on past studies of inter-rater reliability for QoL, with parents of adolescents reporting lower QoL when compared with adolescent reports. Adolescents reported QoL below the population mean for all domains. Conclusions: Results of this study provide preliminary evidence that adolescents with ASDs are able to report on their own QoL in a valid and reliable manner. Based on our findings, the measurement of QoL may be useful for clinical care and research about adolescents with ASDs.

Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports

PurposeTo compare adolescent self-reports with two types of parent reports regarding the quality of life (QoL) of adolescents with Autism Spectrum Disorders (ASDs): (1) standard parent reports, in which parents give their own perspective on their adolescent child’s QoL and (2) parent proxy reports, in which parents indicate how they believe their adolescent child would answer.MethodsThirty-nine adolescents with ASDs and their parents completed the Pediatric Quality of Life Inventory (PedsQL). Parents completed the form twice, once using standard parent report instructions and again using proxy instructions. Concordance among the three reports was evaluated via Pearson correlations. Differences in means were assessed via ANOVAs.ResultsCorrelations were higher between parent proxy reports and adolescent self-reports than between standard parent reports and adolescent self-reports. In addition, average scores on the parent proxy reports were closer to adolescents’ self-reports than were average scores on the standard parent reports.ConclusionsThese results demonstrate that parents of adolescents with ASDs have different opinions about their children’s quality of life than their children do, and that they are aware of these differences. If the goal is to reduce discrepancy between the reports of parents and their adolescent children with ASDs, it may be advisable to ask parents to report on their child’s QoL as they believe their children would.

Early Intervention in Pediatrics Offices for Emerging Disruptive Behavior in Toddlers

BACKGROUND This study provides preliminary data about a parenting intervention for families of preschoolers with early attention deficit hyperactivity disorder/oppositional defiant disorder symptoms carried out in two diverse primary care pediatric offices. METHOD Parents of toddlers completed behavioral screening questionnaires at well-child visits. Eligible parents participated in a 10-week parenting education group using the Incredible Years program. Mothers completed several outcome measures at three time points: before participating in the group, immediately after the group ended, and 6 months thereafter. These measures assessed changes in parenting practices, parenting stress, and child symptoms. Parent and provider satisfaction also were assessed. RESULTS Mothers reported improvements in parenting skills and a decrease in stress. They also reported a decrease in child aggression and an increase in compliance. Mothers and providers reported high levels of satisfaction. CONCLUSIONS Results support the benefits and feasibility of providing parenting education groups to parents of toddlers in pediatric practice settings.

The Preschool Pediatric Symptom Checklist (PPSC): Development and Initial Validation of a New Social/Emotional Screening Instrument

OBJECTIVE This article describes the development and initial validation of the Preschool Pediatric Symptom Checklist (PPSC), a social/emotional screening instrument for children 18 to 60 months of age. The PPSC was created as part of a comprehensive screening instrument designed for pediatric primary care and is modeled after the Pediatric Symptom Checklist. METHOD Items for the PPSC were developed by a team of experts who reviewed existing assessment instruments and relevant research literature. Scale construction and initial validation (including factor analysis and tests of construct validity) were conducted with 292 families from pediatric primary care sites and 354 families from referral clinics. One hundred seventy-one additional families were recruited from primary care sites to obtain an independent replication sample. RESULTS Exploratory factor analysis revealed 4 dimensions of the PPSC: Externalizing, Internalizing, Attention Problems, and Parenting Challenges. These dimensions were incorporated into a bifactor model that displayed a strong general factor, thus supporting the use of a total score. The PPSC total score shows strong internal and retest reliability, and it identifies children who score in the clinical range of a longer, well-validated, and more comprehensive parent-report instrument (the Child Behavior Checklist), as well as children who are reported to have a range of behavioral diagnoses. Moreover, sensitivity and specificity with respect to these criteria were comparable to those of another well-accepted but longer screener, the Ages & Stages Questionnaire: Social/Emotional. Finally, results for the PPSC total scale remained consistent when replicated in an independent sample. CONCLUSION The PPSC shows promise as a social/emotional screening instrument for use in pediatric primary care.

Surveillance of children's behavior and development: practical solutions for primary care.

R. Christopher Sheldrick, PhD, Ellen C. Perrin, MD Screening and surveillance of children’s behavior and development are increasingly accepted as core elements of pediatric practice.1 Growing enthusiasm for both processes—including initiatives in many states to encourage or even mandate their adoption in pediatrics2— highlights the need for clarification. Reasonable concerns exist about the feasibility of carrying out either or both in a “real world” primary care setting. For this reason, relevant instruments must be judged not only on their validity, but also on whether they can be appropriately administered in a time and cost-effective manner. Computer technologies have the potential to enhance feasibility, thus allowing for the use of a range of valid instruments to support screening and surveillance.

Pediatricians’ Perceptions of an Off-Site Collaboration With Child Psychiatry

Despite the high prevalence and morbidity of emotional and behavioral disorders among children, many patients have limited access to quality mental health services. Because virtually all children see a primary care pediatrician (PCP) at least annually, pediatric offices are seen as ideal settings for providing these services. Unfortunately, enormous requirements for prevention, identification, and care of a large number of pediatric health conditions, and increasing requirements for documentation and billing conspire with insufficient training to limit pediatricians’ ability to manage mental health problems. Collaboration between PCPs and mental health and child development (MH/D) clinicians has been proposed as a possible solution. Most research about collaborative care focuses on models in which a mental health clinician is colocated in a primary care office. In a recent national survey, 17% of practicing pediatricians reported having such an arrangement. Substantial barriers interfere with successful implementation of such models, including the need for changes in practice organization and the complexity of reimbursement mechanisms. Collaborative care models that do not require colocation have been proposed as cost-effective alternatives. One example is the Massachusetts Child Psychiatry Access Project (MCPAP), founded in 2005. The service provides mental health consultation services to enrolled PCPs, usually by telephone. Six regional teams, centered at academic medical centers, cover all regions of Massachusetts. Each includes at least 3 full-time members: a child psychiatrist, a licensed child and family therapist, and a care coordinator. Some teams also include a specialized advanced practice registered nurse. PCPs may call MCPAP’s hotline to ask diagnostic questions, receive consultation on medication, or obtain guidance about community MH/D resources. MCPAP clinicians may provide referrals for specialized followup, work directly with parents to coordinate specialty care, or meet with patients for outpatient consultations as needed. MCPAP is financed by the Department of Mental Health using state funds and is free to patients, regardless of insurance status. MCPAP initiated a National Network of Child Psychiatry Access Programs to promote the development and sustainability of similar programs. Twenty-three other state and regional programs are currently enrolled. Currently, nearly all Massachusetts pediatricians are registered with MCPAP. In previous surveys of its members, MCPAP has found the majority to be highly satisfied with its services. We conducted an independent survey of members of the Massachusetts Chapter of the American Academy of Pediatrics (MCAAP) who are currently practicing primary care about their perceptions of the MH/D resources they have available to them, including MCPAP.

Developing Autism Screening Criteria for the Brief Infant Toddler Social Emotional Assessment (BITSEA)

There is a critical need for evidence-based, broadband behavioral, and ASD screening measures for use in pediatric and early educational settings to ensure that young children at risk for developing social-emotional disorders and/or ASD are provided with early intervention services to optimize long-term outcomes. The BITSEA is a 42-item screener designed to identify social-emotional/behavioral problems and delays/deficits in social-emotional competence among 11–48-month-olds; 19 items describe behaviors consistent with ASD. Secondary data analysis was employed to develop cut-scores for ASD subscales using Receiver Operating Curves, discriminating children with (n = 223) and without (n = 289) ASD. Cut-scores demonstrated moderate-to-high discriminative power, sensitivity, specificity, and PPV. Findings highlight feasibility of using a broadband social-emotional competence and behavior problem screener to improve early detection of ASD.

Is a Positive Developmental-Behavioral Screening Score Sufficient to Justify Referral? A Review of Evidence and Theory

In their recommendations on screening for autism and developmental disabilities, the American Academy of Pediatrics recommends referral subsequent to a positive screening result. In this article, we argue that positive screening results are not always sufficient to justify a referral. We show that although positive predictive values are often low, they actually overstate the probability of having a disorder for many children who screen positive. Moreover, recommended screening thresholds are seldom set to ensure that the benefits of referral will equal or exceed the costs and risk of harm, which is a necessary condition for an optimal threshold in decision analysis. Drawing on recent recommendations for the Institute of Medicine/National Academy of Medicine, we discuss the implications of this argument for pediatric policy, education, and practice. In particular, we recommend that screening policies be revised to ensure that the costs and benefits of actions recommended in the event of a positive screen are appropriate to the screening threshold. We recommend greater focus on clinical decision-making in the education of physicians, including shared decision-making with patients and their families. Finally, we recommend broadening the scope of screening research to encompass not only the accuracy of specific screening instruments, but also their ability to improve decision-making in the context of systems of care.