Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder.

BACKGROUND: Outcomes of children diagnosed with autism spectrum disorder (ASD) generally focus on cognition, language, behavioral, and adaptive functioning, yet it is unknown whether this reflects patient and caregiver priorities. OBJECTIVE: Identify parental perceptions of ASD outcomes and identify whether health care providers are currently addressing these concerns. METHODS: Participant were 60 parents of school-aged children previously diagnosed with ASD participating in a larger autism outcomes study. Parents answered the open-ended question, "What aspect of your child's functioning matters most for your child at this time?" They also ranked a list of outcome categories (thinking and reasoning skills, daily living skills, etc). Parents answered a second open-ended question, "What should healthcare providers be asking about how your child is doing, that they may not be currently asking?" Open-ended independent coding and thematic analysis were used to identify themes for the open-ended questions. RESULTS: The most common themes identified with "what aspect of your child's functioning matters most" were "Social," "Communication," "Emotional," and "Behavior." These were similar to the results of a ranking question in which parents ranked "Communicating with and understanding others," "Social skills," and "Behavior" as most important. "Emotional" was a unique theme, although there is potential overlap between this and the theme of "Behavior." The most common theme identified with the question about what health care providers should be asking was "Social," followed by "Nothing." CONCLUSION: This study demonstrates that parental concerns largely match previous outcome categories, with the exception of a theme identified as "Emotional" which may overlap with "Behavior."

Referring Attention-Deficit/Hyperactivity Disorder: Gaining Perspective From Advanced Practice Providers in Primary Care.

The objective of the current study is to identify provider, patient, and family characteristics associated with pediatric advanced practice provider (APP) decisions to refer to a subspecialist for diagnosis and management of attention-deficit/hyperactivity disorder (ADHD). We conducted a cross-sectional electronic survey of pediatric primary care APPs using member lists of professional organizations. T tests and chi-square analysis were conducted to identify group differences. Most respondents rated themselves as comfortable diagnosing and managing ADHD. We found no significant difference between groups based on comfort level or likelihood to refer. APPs working in suburban settings report significantly lower levels of comfort. Self-designation as the practice's primary provider for behavioral/mental health concerns had significantly higher levels of comfort and were less likely to refer. In a limited sample, most APPs reported comfort diagnosing and managing ADHD. Activities to identify and ameliorate gaps in ADHD knowledge and care need to consider this growing part of the workforce.

Autism Spectrum Disorder Parent Report for Outcome Monitoring: A Preliminary Report of Development and Clinical Utility.

OBJECTIVE: Children with autism spectrum disorder (ASD) face challenges across many functional domains. A tool that gathers relevant clinical information before visits, emphasizing symptoms that are likely to change over development and inform clinical interventions, could improve health care quality, allowing for more patient-centered and efficient care. This study evaluated the clinical utility and preliminary psychometrics of the ASD Parent Report for Outcome Monitoring (ASD-PROM), a web-based measure assessing competence in core features of ASD, along with the breadth of concerns and comorbidities that frequently co-occur with ASD. METHODS: An interdisciplinary team drafted the ASD-PROM and made iterative revisions based on parent feedback. Parents of 62 children completed the ASD-PROM before their autism-specialty clinical visit, 53 completed the ASD-PROM twice, and 48 completed the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) concurrently. Parents (n = 25) and clinicians (n = 13) completed postvisit surveys to assess utility (phase 1). The ASD-PROM was then released for general clinical use (phase 2). RESULTS: On a Likert scale (1 = very poorly, 10 = very well), parents found that ASD-PROM items described their child's abilities well (median = 8.0; interquartile range [IQR]: 7.0-9.5) and had a positive effect on care (median = 8.0; IQR: 7.0-10.0). Clinicians found the ASD-PROM effective in assessing parent-reported patient abilities (median = 9.0, IQR: 7.0-9.0) and felt the ASD-PROM helped make their care more patient-centered and efficient (both median = 8.0, IQR: 6.0-9.0). Two-week test-retest reliability was acceptable (0.95). ASD-PROM scores correlated positively with scores from similar domains on the Vineland-II (Pearson r 0.30-0.50, medium to large effects). CONCLUSION: The ASD-PROM is a freely available tool to gather information on developmental and behavioral functioning in children with ASD before autism-specialty clinical visits. Clinical utility and preliminary psychometrics are promising, although limitations (including a low response rate during clinical use and a need for additional in-depth assessments and potential resulting modifications to the tool) remain to be addressed. Ultimately, the ASD-PROM may help promote patient-centered and efficient care for children across a wide range of ages and developmental levels.

Developing the Evidence-Grading Tools and Process for the Complex Attention-Deficit/Hyperactivity Disorder Guideline.

Clinical practice guidelines (CPGs) rely on a robust assessment of the quality of evidence supporting guideline recommendations. For the Society for Developmental and Behavioral Pediatrics (SDBP) CPG for the Assessment and Treatment of Children and Adolescents with Complex Attention-Deficit Hyperactivity Disorder (ADHD), the nature of the evidence and resource constraints led the guideline panel to develop an innovative, yet rigorous, approach to evidence grading. This study will (1) describe the challenges of evidence grading for the SDBP Complex ADHD Guideline; (2) discuss the rationale, process, and tools developed to conduct evidence grading; and (3) report on the experiences and readiness of the volunteer reviewers with diverse background in research methodology to conduct evidence grading. This evidence review process may serve as an example of approaches that can be used by other groups tasked with evaluating the evidence in support of new CPGs.

Society for Developmental and Behavioral Pediatrics Clinical Practice Guideline for the Assessment and Treatment of Children and Adolescents with Complex Attention-Deficit/Hyperactivity Disorder.

Attention-deficit/hyperactivity disorder (ADHD) is the most common childhood neurodevelopmental disorder and is associated with an array of coexisting conditions that complicate diagnostic assessment and treatment. ADHD and its coexisting conditions may impact function across multiple settings (home, school, peers, community), placing the affected child or adolescent at risk for adverse health and psychosocial outcomes in adulthood. Current practice guidelines focus on the treatment of ADHD in the primary care setting. The Society for Developmental and Behavioral Pediatrics has developed this practice guideline to facilitate integrated, interprofessional assessment and treatment of children and adolescents with "complex ADHD" defined by age (<4 years or presentation at age >12 years), presence of coexisting conditions, moderate to severe functional impairment, diagnostic uncertainty, or inadequate response to treatment.

Not Really "The Same Thing".

CASE: Susie is a 10-year-old girl who is followed by a developmental-behavioral pediatrician for attention-deficit/hyperactivity disorder (ADHD), combined type and challenging behaviors. Susie has been treated with extended-release methylphenidate HCl 36 mg daily and extended-release guanfacine 1 mg daily for the past year. Susie attended an evidence-based summer treatment program for ADHD for 8 weeks over the summer, and the family has continued to attend monthly behavioral therapy visits with a local child psychologist.Parents report that, until recently, Susie's symptoms of ADHD were well controlled. Susie had a positive start to the school year but has had increasing difficulties over the past month. Specifically, Susie's classroom teacher has communicated that she is having difficulty maintaining attention, is easily distracted, and is missing several homework assignments. While obtaining a careful interim history, Susie's parents report that there have not been any changes or new stresses in the home or school environments. They were pleased with the behavioral guidance provided during the summer treatment program and have continued to use those strategies.Further discussion revealed that parents noticed a change in the appearance of Susie's methylphenidate tablets when the prescription was last filled. Although the previous prescriptions were filled with oblong, white tablets, the most recent prescription was filled with round, white tablets. Susie's parents contacted the pharmacy and were told that Susie's prescription was filled with "the same thing as before." The pharmacist explained that the tablets looked different because the manufacturer had changed in order to comply with the preferences of Susie's insurance provider. What would be your next steps in Susie's care?

ADHD Diagnosis and Treatment Guidelines: A Historical Perspective.

Attention-deficit/hyperactivity disorder (ADHD) is the most common behavioral condition and the second most common chronic illness in children. The observance of specific behaviors in multiple settings have remained the most successful method for diagnosing the condition, and although there are differences in specific areas of the brain, and a high heritability estimate (∼76%), they are not diagnostically specific. Medications, and particularly stimulant medication, have undergone rigorous studies to document their efficacy dating back to the 1970s. Likewise, behavioral interventions in the form of parent training and classroom programs have demonstrated robust efficacy during the same time period. Both medication and behavioral interventions are symptomatic treatments. The availability of only symptomatic treatments places ADHD in the same category as other chronic conditions such as diabetes and asthma. Successful treatment of most individuals requires ongoing adherence to the therapy. Improved communication between patients and their families, primary and mental health providers, and school personnel is necessary for effective ADHD treatment. Further enhancement of electronic systems to facilitate family, school, and provider communication can improve monitoring of ADHD symptoms and functional performance. The American Academy of Pediatrics ADHD guidelines were initially developed to help primary care clinicians address the needs of their patients with ADHD and were further refined with the second revision in 2019.

Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents.

Attention-deficit/hyperactivity disorder (ADHD) is 1 of the most common neurobehavioral disorders of childhood and can profoundly affect children's academic achievement, well-being, and social interactions. The American Academy of Pediatrics first published clinical recommendations for evaluation and diagnosis of pediatric ADHD in 2000; recommendations for treatment followed in 2001. The guidelines were revised in 2011 and published with an accompanying process of care algorithm (PoCA) providing discrete and manageable steps by which clinicians could fulfill the clinical guideline's recommendations. Since the release of the 2011 guideline, the Diagnostic and Statistical Manual of Mental Disorders has been revised to the fifth edition, and new ADHD-related research has been published. These publications do not support dramatic changes to the previous recommendations. Therefore, only incremental updates have been made in this guideline revision, including the addition of a key action statement related to diagnosis and treatment of comorbid conditions in children and adolescents with ADHD. The accompanying process of care algorithm has also been updated to assist in implementing the guideline recommendations. Throughout the process of revising the guideline and algorithm, numerous systemic barriers were identified that restrict and/or hamper pediatric clinicians' ability to adopt their recommendations. Therefore, the subcommittee created a companion article (available in the Supplemental Information) on systemic barriers to the care of children and adolescents with ADHD, which identifies the major systemic-level barriers and presents recommendations to address those barriers; in this article, we support the recommendations of the clinical practice guideline and accompanying process of care algorithm.

Characteristics of Future Models of Integrated Outpatient Care.

Replacement of fee-for-service with capitation arrangements, forces physicians and institutions to minimize health care costs, while maintaining high-quality care. In this report we described how patients and their families (or caregivers) can work with members of the medical care team to achieve these twin goals of maintaining-and perhaps improving-high-quality care and minimizing costs. We described how increased self-management enables patients and their families/caregivers to provide electronic patient-reported outcomes (i.e., symptoms, events) (ePROs), as frequently as the patient or the medical care team consider appropriate. These capabilities also allow ongoing assessments of physiological measurements/phenomena (mHealth). Remote surveillance of these communications allows longer intervals between (fewer) patient visits to the medical-care team, when this is appropriate, or earlier interventions, when it is appropriate. Systems are now available that alert medical care providers to situations when interventions might be needed.

Timely Interventions for Children with ADHD through Web-Based Monitoring Algorithms.

The aim of this study was to evaluate an automated trigger algorithm designed to detect potentially adverse events in children with Attention-Deficit/Hyperactivity Disorder (ADHD), who were monitored remotely between visits. We embedded a trigger algorithm derived from parent-reported ADHD rating scales within an electronic patient monitoring system. We categorized clinicians' alert resolution outcomes and compared Vanderbilt ADHD rating scale scores between patients who did or did not have triggered alerts. A total of 146 out of 1738 parent reports (8%) triggered alerts for 98 patients. One hundred and eleven alerts (76%) required immediate clinician review. Nurses successfully contacted parents for 68 (61%) of actionable alerts; 46% (31/68) led to a change in care plan prior to the next scheduled appointment. Compared to patients without alerts, patients with alerts demonstrated worsened ADHD severity (ß = 5.8, 95% CI: 3.5⁻8.1 [p < 0.001] within 90 days prior to an alert. The trigger algorithm facilitated timely changes in the care plan in between face-to-face visits.

Caring electronically for young outpatients who have epilepsy.

PURPOSE: The purpose of this study was to review electronic tools that might improve the delivery of epilepsy care, reduce medical care costs, and empower families to improve self-management capability. METHOD: We reviewed the epilepsy-specific literature about self-management, electronic patient-reported or provider-reported outcomes, on-going remote surveillance, and alerting/warning systems. CONCLUSIONS: The improved care delivery system that we envision includes self-management, electronic patient (or provider)-reported outcomes, on-going remote surveillance, and alerting/warning systems. This system and variants have the potential to reduce seizure burden through improved management, keep children out of the emergency department and hospital, and even reduce the number of outpatient visits.

Using ADHD Medications to Treat Coexisting ADHD and Reading Disorders: A Systematic Review.

Attention-deficit/hyperactivity disorder (ADHD), the most common pediatric neurobehavioral disorder, frequently presents with coexisting reading disorders (RDs). Despite this, it is unclear whether medication improves symptoms and function in children with comorbid ADHD and RD. We present a systematic review of studies investigating the effects of ADHD medications on ADHD symptoms, academic outcomes, and neuropsychological measures in this important group.

Development and Evaluation of an Educational Initiative to Improve Hospital Personnel Preparedness to Care for Children with Autism Spectrum Disorder.

OBJECTIVE: To evaluate the effectiveness of a multimodal educational curriculum on increasing hospital personnel's awareness of successful strategies and comfort in caring for children with autism spectrum disorder (ASD). METHODS: We developed a 3-part training for front-line staff (i.e., front desk, clinical assistants, and phlebotomists) in 8 outpatient hospital departments frequented by patients with ASD. Following a needs assessment, participants completed an online educational module and then attended an in-person seminar tailored to each department. To evaluate training effectiveness, we administered pre-, immediate post-, and 1 month post-training surveys assessing personnel attitudes, comfort, perceived knowledge, and behaviors around caring for patients with ASD. RESULTS: We trained 168 staff members from 8 departments. On the needs assessment, participants (N = 129) reported a mean 2.5 behavioral incidents involving patients with ASD over the previous 3 months; 92% believed that the training would be helpful for their work. Across pre-, immediate- and 1-month post-training surveys, scores improved on all questions related to personnel attitudes about the importance of ASD-friendly care, comfort interacting with patients with ASD, perceived knowledge about ASD, and self-reported frequency of behaviors intended to help children with ASD adjust to the hospital setting (p < 0.05). There was no difference in baseline scores or change in scores between clinical and nonclinical personnel. On a program evaluation (N = 57), 81% rated the training as "very good" or "excellent," and 87% reported that they would be able to apply training material immediately to their role. CONCLUSION: This training initiative led to improvement in attitudes, comfort level, perceived knowledge, and self-reported behaviors of hospital personnel working with patients with ASD, which was maintained over 1 month.

Topical Review: Transitional Services for Teens and Young Adults With Attention-Deficit Hyperactivity Disorder: A Process Map and Proposed Model to Overcoming Barriers to Care.

Objective: To provide a topical review of the personal vulnerabilities and systemic barriers facing transitional age young adults with attention-deficit hyperactivity disorder (ADHD), followed by a proposed model for overcoming those barriers. Methods: Drawing from a growing, but limited, literature on the topic, we outline a process map for identifying and troubleshooting barriers to care in this at-risk population. Results: Young adults with ADHD frequently lack the organizational skills, time management, prioritization, and persistence to manage their health care at an expected level of adult independence. These difficulties are compounded by a health-care system that has less time or fewer resources for supporting young adult patients. Conclusions: Recommendations for easing the transition from pediatric to adult care for late adolescents with ADHD include heavily leveraging the doctor-patient relationship, and capturing the young adult's attention through technologies that already absorb them.

Advancing the Measurement of Care Coordination in Pediatric Behavioral Health.

OBJECTIVE: To describe the measure review and evaluation process used to identify new measures of care coordination for children with behavioral health needs conducted as part of Massachusetts' Children's Health Insurance Program Reauthorization Act Quality Demonstration Grant. METHOD: The Massachusetts Child Health Quality Coalition identified a shortage of pediatric measures of care coordination in behavioral health. After an extensive literature review, the Measure Development Committee applied the Care Coordination Key Elements Framework (Framework), which was designed as part of the grant work, and used a modified RAND Delphi method to conduct feasibility and validity evaluation and propose the new candidate measures for further rigorous testing. RESULTS: Thirty-two measures were evaluated. One existing Healthcare Effectiveness Data and Information Set and 8 newly proposed measures met the criteria for feasibility and reliability. These measures represented each of the key elements contained in the Framework. The measures need further testing to ensure scientific acceptability and wide usability. CONCLUSION: A multipronged methodology was used to propose measures of care coordination in the space of pediatric behavioral health to fill the identified gaps in existing measures.

Management of Attention-Deficit/Hyperactivity Disorder by Developmental-Behavioral Pediatricians: A DBPNet Study.

OBJECTIVE: To describe practice patterns for developmental-behavioral pediatricians (DBPs) practicing within Developmental-Behavioral Pediatrics Research Network (DBPNet) academic medical centers providing follow-up for children with attention-deficit/hyperactivity disorder (ADHD) and determine how well they adhere to American Academy of Pediatrics ADHD Clinical Practice Guidelines. METHODS: Seventy-eight DBPs at 12 academic medical centers participating in the DBPNet were asked to complete follow-up encounter surveys for patients with ADHD or autism spectrum disorder seen from 12/2011 through 6/2012. Data regarding patient characteristics, comorbid conditions, and medication management were obtained at the time of each visit. RESULTS: Fifty-seven DBPs completed 301 ADHD follow-up encounter surveys; 75.3% of patients were male with mean age 9.57 years (SD = 3.3). Race/ethnicity was primarily white/non-Hispanic with similar numbers on private insurance (41.5%) versus Medicaid (45.5%). DBPs identified comorbid learning disorders in 27.6% of children ≥6 years. Only 58.3% of children <6 years received counseling/behavioral therapy or had it recommended during the visit. DBPs primarily (90.6%) prescribed medications FDA-approved for ADHD treatment and growth was monitored for >98% of visits during which stimulants were prescribed. Parent- and teacher-completed rating scales were reviewed/completed during 43.9% and 37.8% of visits, respectively. There were no child or physician factors consistently associated with variation in practice patterns. CONCLUSION: Developmental-behavioral pediatricians practicing within DBPNet medical centers adhere to the recommended medication prescribing practices for ADHD, including use of FDA-approved medications and monitoring growth. However, DBPs within DBPNet do not consistently review ADHD rating scales or recommend behavioral counseling for children <6 years of age as recommended.

Treatment of Attention-Deficit/Hyperactivity Disorder in Adolescents: A Systematic Review.

IMPORTANCE: Although attention-deficit/hyperactivity disorder (ADHD) is highly prevalent in adolescents and often persists into adulthood, most studies about treatment were performed in children. Less is known about ADHD treatment in adolescents. OBJECTIVE: To review the evidence for pharmacological and psychosocial treatment of ADHD in adolescents. EVIDENCE REVIEW: The databases of CINAHL Plus, MEDLINE, PsycINFO, ERIC, and the Cochrane Database of Systematic Reviews were searched for articles published between January 1, 1999, and January 31, 2016, on ADHD treatment in adolescents. Additional studies were identified by hand-searching reference lists of retrieved articles. Study quality was rated using McMaster University Effective Public Health Practice Project criteria. The evidence level for treatment recommendations was based on Oxford Centre for Evidence-Based Medicine criteria. FINDINGS: Sixteen randomized clinical trials and 1 meta-analysis, involving 2668 participants, of pharmacological and psychosocial treatments for ADHD in adolescents aged 12 years to 18 years were included. Evidence of efficacy was stronger for the extended-release methylphenidate and amphetamine class stimulant medications (level 1B based on Oxford Centre for Evidence-Based Medicine criteria) and atomoxetine than for the extended-release α2-adrenergic agonists guanfacine or clonidine (no studies). For the primary efficacy measure of total symptom score on the ADHD Rating Scale (score range, 0 [least symptomatic] to 54 [most symptomatic]), both stimulant and nonstimulant medications led to clinically significant reductions of 14.93 to 24.60 absolute points. The psychosocial treatments combining behavioral, cognitive behavioral, and skills training techniques demonstrated small- to medium-sized improvements (range for mean SD difference in Cohen d, 0.30-0.69) for parent-rated ADHD symptoms, co-occurring emotional or behavioral symptoms, and interpersonal functioning. Psychosocial treatments were associated with more robust (Cohen d range, 0.51-5.15) improvements in academic and organizational skills, such as homework completion and planner use. CONCLUSIONS AND RELEVANCE: Evidence supports the use of extended-release methylphenidate and amphetamine formulations, atomoxetine, and extended-release guanfacine to improve symptoms of ADHD in adolescents. Psychosocial treatments incorporating behavior contingency management, motivational enhancement, and academic, organizational, and social skills training techniques were associated with inconsistent effects on ADHD symptoms and greater benefit for academic and organizational skills. Additional treatment studies in adolescents, including combined pharmacological and psychosocial treatments, are needed.