Value-Driven Care in Developmental-Behavioral Pediatrics, Part 1: The Value Proposition of Developmental-Behavioral Pediatrics.

The drive to improve quality and reduce cost of health care is leading to a value-driven transformation of the US health care landscape. This is the first of a 2-part series on value-driven care and its implications for developmental-behavioral pediatrics (DBP). Tools derived from business/manufacturing models have been applied with some success to health care to better understand and enhance value. Value can be defined most simply as health outcomes achieved per dollar spent, but there are challenges in accounting for the full cost of a cycle or episode of care. When taking into account the "five Ds"-Development, Dependency, Differential Epidemiology, Demographics, and Dollars-the potential value of pediatric care is brought into sharper focus. The field of DBP in particular has the potential to add value through prevention, integration, efficiency, standardization, and innovation. The value proposition of DBP is illustrated by focusing on particular conditions or cycles of care commonly encountered in DBP practice: (1) children 0 to 3 years of age identified as having global developmental delay, (2) recent diagnosis of complex attention-deficit hyperactivity disorder (ADHD) (ADHD plus comorbid conditions), and (3) children with autism spectrum disorder and disruptive behavior. The second part of the series focuses on quality of care, emphasizing the important challenges that lie ahead for the field of DBP in measuring outcomes of care. With a discussion of national trends and a local example of a DBP program's response to these trends, the series is intended to provoke discussion and action in the field, contribute to the demonstration of value of a DBP approach to care, and help to chart a course toward growth and sustainability of DBP in an era of value-based care.

Value-Driven Care in Developmental-Behavioral Pediatrics, Part 2: Measuring Quality and Meeting the Challenge.

The drive to improve quality and reduce cost of health care is leading to a value-driven transformation of the US health care landscape. This is the second of a 2-part series on value-driven care and its implications for developmental-behavioral pediatrics (DBP). Part 1 addressed costs of care and enhancing value of care, with a particular focus on the value proposition of the field of DBP. This study begins with a discussion of the Donabedian's model of quality, including structure, process, patient satisfaction, and outcomes. The challenges of measuring process and outcomes in DBP are discussed, with a focus on (1) children 0 to 3 years of age identified as having global developmental delay, (2) recent diagnosis of complex attention-deficit hyperactivity disorder (ADHD) (ADHD plus comorbid conditions), and (3) children with autism spectrum disorder (ASD) and disruptive behavior. The study concludes with some of the important next steps for DBP providers, researchers, health care systems, professional societies, and families. With a discussion of national trends and a local example of a DBP program's response to these trends, the series is intended to provoke discussion and action in the field, contribute to the demonstration of value of a DBP approach to care, and help to chart a course toward growth and sustainability of DBP in an era of value-based care.

Comparison of children diagnosed with cerebral palsy in a private cord blood bank to an epidemiological sample.

BACKGROUND: Although cord blood (CB) stem cell research is being conducted for treatment of cerebral palsy (CP), little is known about children with CP and stored CB. AIMS: To compare demographic and clinical characteristics of children with CP and stored CB to children with CP identified in a population-based study. METHODS AND PROCEDURES: The Longitudinal Umbilical Stem cell monitoring and Treatment REsearch (LUSTRE®) Registry recruited children from the largest US private CB bank. Demographics, co-morbidities, and gross motor function (GMFCS level and walking ability) were collected and, where possible, compared with the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network. OUTCOMES AND RESULTS: 114 LUSTRE participants were compared to 451 ADDM participants. LUSTRE participants were more likely to be white, but sex distribution was similar. Co-morbidities (autism and epilepsy) and functional mobility were also similar. CONCLUSIONS AND IMPLICATIONS: The results of this analysis suggest that while children diagnosed with CP and with access to stored CB differ from a broader population sample in terms of demographics, they have similar clinical severity and comorbidity profiles. As such, LUSTRE may serve as a valuable source of data for the characterization of individuals with CP, including individuals who have or will receive CB infusions.

Online Information-Seeking Behaviors of Parents of Children With ADHD.

This article describes ( a) parent questions about ADHD (attention deficit/hyperactivity disorder), ( b) parent Internet use to seek ADHD information, and ( c) associations between type of Internet access and ADHD information-seeking. Seventy parents of children (ages 7-17 years) with ADHD completed questionnaires after their child's visit with their pediatrician. Bivariate relationships were assessed using chi-square statistics, Pearson correlation coefficients, or t tests. Parents identified an average of 8.9 questions about ADHD for their child's provider. Common questions were related to medication and long-term implications of ADHD. A majority of parents searched the Internet for general ADHD information (87%) and ADHD medication information (81%). White parents accessed the Internet significantly more via home computer, mobile phone, and tablet, and significantly less via public library than non-White parents. Parents who accessed the Internet via home computers and tablets were more likely to search the Internet for ADHD medication information than parents who did not.

The Clinical Functional Impairment Scale Development.

OBJECTIVE: The purpose of the project was to review content validity and assess the span of responses for the newly developed Clinical Functional Impairment Scale (CFIS). METHODS: A cross-sectional, content validity process using focus groups of developmental, behavioral pediatric clinicians was conducted. After qualitative analysis of the focus group data, adjustments were made in the CFIS based on the recommendations of the content experts. A survey was conducted of clinicians participating in the online Society of Developmental and Behavioral Pediatrics Discussion Board. Clinicians reviewed 2 case studies and used the CFIS to score severity and interval change of predetermined functional impairments. The amount of spread in the answers was assessed by calculating the index of dispersion. RESULTS: Qualitative analysis of the focus groups resulted in adjustment to the CFIS to 20 functional impairments, with a 5-point Likert scale of severity and a 7-point Likert scale of interval change. Ninety-four clinicians participated in the survey. The index of dispersion ranged from 0.49 to 0.88. The interval ratings of severity and interval change had lower dispersion ranges. CONCLUSION: The CFIS uses a mutual prioritization by the family and clinician of the child's functional impairments. The study demonstrated that the clinicians' ratings of the case studies were more variable in the initial symptom severity score than their ratings of symptom severity and interval change in symptoms. Further testing of the CFIS is planned using face-to-face clinical encounters and including parent/caregiver ratings of severity and interval change.

Youth Views on Communication About ADHD and Medication Adherence.

The purpose of this study was to examine youth perceptions of attention deficit hyperactivity disorder (ADHD) communication with their pediatric providers, their reported adherence to their ADHD medications, and their desired location for an ADHD educational program. Youth ages 7 through 17 with an ADHD diagnosis were recruited. A research associate interviewed the youth. Parents completed demographic questionnaires. Seventy families participated. One-third of the youth wanted more discussion about ADHD with their providers during visits. The average youth had over eight questions about ADHD and its treatment. Most youth wanted to learn about ADHD at their provider's office. Non-white and older youth were significantly more likely to be less adherent to their ADHD medications. Youth want their providers to engage them more during visits. Providers should take advantage of this interest to engage youth more in discussions regarding ADHD and its treatment during pediatric ADHD visits.

Communication about ADHD and its treatment during pediatric asthma visits.

The objectives of the study were to examine provider-family communication about attention deficit disorder during pediatric asthma visits. Children with asthma, aged 8 through 16 and their parents were recruited at five pediatric practices. All medical visits were audio-taped. There were 296 asthmatic children enrolled into the study and 67 of them also had attention deficit hyperactivity disorder (ADHD). ADHD communication elements suggested by national guidelines were discussed infrequently. Providers were more likely to discuss, educate, and ask one or more questions about ADHD medications if the visit was non-asthma related. Providers included child input into the ADHD treatment regimen during 3% of visits and they included parent input during 4.5% of visits. Only one child and three parents asked questions about ADHD. Providers may neglect essential aspects of good ADHD management and communication in children who have ADHD plus another chronic condition such as asthma. Providers should set appropriate treatment expectations, establish target symptoms, and encourage children and parents to ask questions so mutual decision-making can occur.

Children with spina bifida: key clinical issues.

Spina bifida is the most common of the neural tube defects, which include myelomeningocele, encephalocele, and anencephaly. Spina bifida is a complex and multisystem birth defect, in which one or more vertebral arches may be incomplete. This article discusses the sensory and motor impairments, neurologic disorders, orthopedic and cognitive impairments, and skin and other problems associated with spina bifida. This article also summarizes some of the key clinical issues in the care of children with this complex birth defect.

Conditioned placebo dose reduction: a new treatment in attention-deficit hyperactivity disorder?

OBJECTIVE: This study examined if pairing a placebo with stimulant medication produces a placebo response that allows children with attention-deficit hyperactivity disorder (ADHD) to be maintained on a lower dose of stimulant medication. The primary aim was to determine the efficacy, side effects, and acceptability of a novel conditioned placebo dose reduction procedure. METHOD: Participants included 99 children ages 6 to 12 years with ADHD. After an initial double-blind dose finding to identify optimal dose of mixed amphetamine salts, subjects were randomly assigned to 1 of 3 treatments of 8-week duration: (a) conditioned placebo dose reduction condition (50% reduced dose/placebo [RD/P]) or (b) a dose reduction only condition (RD) or (c) a no reduction condition (full dose). The innovative conditioned placebo dose reduction procedure involved daily pairing of mixed amphetamine salts dose with a visually distinctive placebo capsule administered in open label, with full disclosure of placebo use to subjects and parents. RESULTS: Seventy children completed the study. There were no differences in subject retention among the 3 groups. Most subjects in the RD/P group remained stable during the treatment phase, whereas most in the RD group deteriorated. There was no difference in control of ADHD symptoms between the RD/P group and the full dose group, and both RD/P and full dose groups showed better ADHD control than the RD group. Treatment emergent side effects were lowest in the RD/P group. CONCLUSION: Pairing placebos with stimulant medication elicits a placebo response that allows children with ADHD to be effectively treated on 50% of their optimal stimulant dose.

Placebo effects in developmental disabilities: implications for research and practice.

Recent clinical trials of secretin in children with autism showed robust placebo effects and no benefit of secretin over placebo. This article explores the reasons for the observed placebo effects, focusing on the heightening of positive expectancy by media attention and by the sensory experiences associated with intravenous injections. Comparisons are drawn with research involving other novel treatments and other clinical populations of children with developmental disabilities and neurobehavioral disorders. Research regarding mechanisms of placebo effects is reviewed, including patient and clinician attributes, expectancy effects, participation effects, changes in caregiver behavior, and conditioning. New evidence regarding the biological basis of placebo effects is briefly presented. Since placebo effects are ubiquitous and may operate by a variety of mechanisms, research design is critical in designing clinical trials and in evaluating other outcomes research. Measurement issues important for research in developmental disabilities are emphasized. Ethical concerns have been raised regarding the use of placebo in clinical research, but current analysis suggests that placebo controls are necessary and defensible on ethical grounds, if certain conditions are met. The study of placebo effects ("placebology") holds great promise as a new area of research in therapeutics. The author's research in the potential augmentation of stimulant effects in children with attention deficit/hyperactivity disorder (ADHD) by adding placebo in open label is briefly presented. The placebo has always been integral to the practice of medicine, but advances in scientific medicine and medical ethics have diminished the role and use of placebo in practice. An innovative approach to the ethical use of placebo is proposed.