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wooden brain puzzle

Parent engagement in treatment benefits ADHD patients

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wooden brain puzzle

Parent engagement in behavior management skills is associated with improvements in child attention, behavior and academic outcomes as well as parenting outcomes, a new study led by Melissa Dvorsky, Ph.D., psychologist at Children’s National Hospital and Director of the ADHD & Learning Differences Program, found.

Parents who frequently use behavior management skills throughout treatment predicts positive parent- and teacher-rated outcomes at the end of treatment. Similarly, parents who continue using these skills after treatment ends predicts improved parent- and teacher-rated outcomes six months later.

The study looks at individual differences in parent engagement in a school-home treatment for children with attention and behavior challenges or attention-deficit/hyperactivity disorder (ADHD). Specifically, Dr. Dvorsky and others found three distinct patterns of the ways in which parents use the behavioral strategies throughout treatment. Parents who increased their use of skills during treatment and had moderate to high adherence by the first few sessions had better parent- and teacher-rated post-treatment outcomes. In other words, they responded better to treatment when experts looked at both child outcomes and parenting. Children had improved behavior, reduced ADHD symptoms and improved academic competence, whereas parents had positive parenting outcomes.

“This study brings to light that there are key differences in how different parents engage in treatment,” Dr. Dvorsky says. “This underscores the importance of supporting families and focusing on strategies that optimize family engagement in treatment given it significantly impacts how well the child responds to treatment.”

With these findings, Dr. Dvorsky says clinicians can identify ways to better engage patients and families in treatment for ADHD, but also for other pediatric conditions too. Families, she says, will experience greater benefits from treatment when they are understanding the skills, engaging in strategies that meet their needs and goals, and practicing skills between sessions.

“Clinicians can now understand the importance of improving treatment engagement and make greater efforts to connect with patients and their families,” she adds. “A greater focus on supporting this treatment engagement is beneficial for patients. I’m hoping to continue this work to study important barriers and facilitators for parent engagement to better understand how we can help patients and families engage in treatment more effectively.”

In order to achieve this, Dr. Dvorsky says this entails a focus on identifying individualized or personalized approaches to match patient’s needs, using adaptive intervention designs and targeting social, emotional and cognitive processes that impact engagement. For youth and families with ADHD, these processes include motivation, social support and executive functioning.

gluten free cupcakes

Celiac disease linked to psychosocial distress

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gluten free cupcakes

A recent study found elevated rates of psychosocial distress among children with celiac disease compared to the general population.

Shayna Coburn, Ph.D., assistant professor and psychologist at Children’s National Hospital, is the lead author of a recent article on the first study to report mental health disorders (MHD) in North American children with celiac disease (CeD). The study found elevated rates of psychosocial distress among the children compared to the general population.

The study is based on electronic surveys of patients’ MHD history, psychological symptoms and experiences with the gluten-free diet (GFD) as well as follow-up visits to the Multidisciplinary Celiac Disease Clinic at Children’s National between spring 2017 and spring 2018. The survey participants included 73 parents of children ages 3 to 18 attending the clinic. The researchers calculated rates of MHD in the children and compared them to National Institute of Mental Health population-level data.

Thirty-four percent of the children had at least one MHD. Their rates of anxiety disorders (16%) and attention-deficit/hyperactivity disorder (ADHD, 16%,) were more common than general population rates. More than one-quarter of parents reported current psychosocial distress in their child (28-39%), and approximately half reported their own stress (51%) and worry about the financial burden (46%) associated with the GFD – the only treatment for the disease.

The findings are detailed in an article titled “Mental Health Disorders and Psychosocial Distress in Pediatric Celiac Disease,” which appears on the website of the Journal of Pediatric Gastroenterology and Nutrition. The article is scheduled to appear in the May 2020 print edition of the journal, which will be available April 24.

Coburn and her co-authors also compared the experiences of children diagnosed with CeD less than three months prior to the study with those diagnosed more than three months prior. They were surprised to find that patients’ rates of comorbid CeD and MHD didn’t differ depending on the time of diagnosis, says Coburn.

Parents of children with new CeD diagnoses were less confident in the GFD, but the timing of a CeD diagnosis did not affect the rates of MHD, stress and financial burden. Children with MHD had more anxiety, anger and overall distress as well as parents who were suffering with distress than those without MHD.

The researchers’ findings about the timing of diagnosis “seemed to indicate that perhaps there’s a chronic stress burden on families that doesn’t necessarily improve with time and might be exacerbated in children who have mental health disorders,” says Coburn, who directs psychosocial services for the hospital’s Celiac Disease Program.

Overall, the findings emphasize the importance of ongoing routine screening and treatment for psychosocial distress associated with CeD and the GFD.

The start of the study coincided with the establishment of the clinic, where Coburn and her colleagues were seeing patients with comorbid CeD and MHD. At the clinic, patients and their families are treated by a gastroenterologist as well as the clinic’s nutritionist, education team, psychologist, neurologist and neuropsychologist during an integrative multidisciplinary appointment.

Coburn notes that generally the psychosocial impact on patients with CeD has been overlooked or viewed as a minor condition. “Our work is showing that there are a lot of psychosocial vulnerabilities in children and adults with celiac disease.”

As she continues her research, Coburn sees a need “to advocate for incorporating psychological screening into routine medical treatment of patients with celiac disease. We’d like this to be part of best practices and want to develop behavioral treatments for patients so they’re succeeding with the gluten-free diet.”

“With ADHD there are problems with impulse control, which can make it extra hard to maintain a gluten-free diet,” says Coburn. The co-principal investigators want to study in-depth some of the families who participated in the earlier study to gauge how effectively they’re able to manage ADHD symptoms in order to maintain a gluten-free diet.

Coburn and Maegan Sady, a neuropsychologist at Children’s National, have received a $25,000 grant from the Lambert Family Foundation to study comorbid ADHD and CeD and how they affect a patient’s ability to adhere to the GFD.

Mark Batshaw

40 years, 8 editions: Writing “Children With Disabilities”

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Mark Batshaw

Forty years ago, Mark L. Batshaw, M.D., almost singlehandedly wrote a 23-chapter first edition that ran about 300 pages. Now Dr. Batshaw’s tome, “Children With Disabilities,” is in its eighth edition, and this new volume is almost 1,000 pages, with 42 chapters, two co-editors and over 35 authors from Children’s National.

Back in 1978, Mark L. Batshaw, M.D., was a junior faculty member at John’s Hopkins University School of Medicine. In the evenings he taught a course in the university’s School of Education  titled “The Medical and Physical Aspects of the Handicapped Child,” for Master’s level special education students. Because no textbook at that time focused on that specific topic, Batshaw developed his own slide set.

“At the end of the first year of teaching the course my students said ‘You really ought to consider writing a text book based on your slides to help us move forward,’ ” Dr. Batshaw recalls. The father of three carved out time by writing on weekends and at night, cutting back on sleep.

His first goal was to create a textbook that would serve as a curriculum for a series of courses that would be taught at universities to specialists who work with children with disabilities, including social workers, physical and occupational therapists, speech and language pathologists, special education teachers, nurses, doctors and dentists.

“I wanted to cover the whole range of disabilities and divided the book initially into a series of sections, including embryology, to help students understand what can go wrong in fetal development to lead to a developmental disability; and chapters on each developmental disability, including autism, attention-deficit/hyperactivity disorder (ADHD), cerebral palsy, learning disabilities and traumatic brain injury,” he says. “The third section was devoted to available treatments, including occupational and physical therapy, speech language therapy, nutrition and medications. The final section focused on outcomes.”

His second aim was for the book to serve as a reference text for professionals in the field. The 33-year-old contacted a brand-new new publisher, Paul H. Brookes Publishing Co., that focused on special education. “They took a chance on me, and I took a chance on them,” he says.

Forty years ago, he almost singlehandedly produced a 23-chapter first edition that ran about 300 pages. Now Dr. Batshaw’s tome is in its eighth edition, and this new volume is almost 1,000 pages. And, rather than being its sole author, Dr. Batshaw enlisted two co-editors and at least five dozen authors who contributed specialty expertise in genetic counseling, social work, physical and occupational therapy, medicine and nursing. His daughter, Elissa, a special education teacher and school psychologist, authored a chapter about special education services, and his son, Drew, an executive at a start-up company, contributed autobiographical letters about the effect ADHD has had on his life.

The book, “Children With Disabilities,” also includes:

  • A glossary of medical terms so that as the reader reviews patient reports they can easily look up an unfamiliar term
  • An appendix on commonly used drugs to treat children with disabilities in order to look up the medicine by name and see the range of doses
  • An appendix devoted to different syndromes children might have
  • A reference section with organizations and foundations that help children with disabilities
  • A web site with sections designed for students and other content designed for teachers with thought questions to guide practical use of information in each chapter and more than 450 customizable PowerPoint slides for download
  • Call-out boxes for interdisciplinary team members, such as genetic counselors, explaining the roles they serve and their educational background, and
  • Excerpts of recent research articles.

“The students say they don’t sell the book. Usually when students have a textbook, they try to sell it second hand after the course ends,” explains Dr. Batshaw, now Executive Vice President, Physician-in-Chief and Chief Academic Officer at Children’s National. “Instead, students keep it and use it as a practical reference as they become professionals in their field. It has had the impact I had hoped for both as a textbook and a reference book: They say they refer to it when they have patients with a particular disorder they’re not used to treating to read up on it.”

Now a bestseller, there are more than 200,000 copies in print, including Portuguese and Ukrainian translations. “It didn’t start that way. It grew organically,” he says.

In addition to Dr. Batshaw, Children’s contributors to “Children With Disabilities” include Nicholas Ah Mew, M.D., pediatric geneticist; Nickie N. Andescavage, M.D., neonatologist; Mackenzie E. Brown, D.O., fellow in Pediatric Rehabilitation Medicine; Justin M. Burton, M.D., chief, Division of Pediatric Rehabilitation Medicine; Gabrielle Sky Cardwell, BA, clinical research assistant; Catherine Larsen Coley, PT, DPT, PCS, physical therapist; Laurie S. Conklin, M.D., pediatric gastroenterologist; Denice Cora-Bramble, M.D., MBA, executive vice president and chief medical officer; Heather de Beaufort, M.D., pediatric ophthalmologist; Dewi Frances T. Depositario-Cabacar, M.D., pediatric neurologist; Lina Diaz-Calderon, M.D., fellow in Pediatric Gastroenterology; Olanrewaju O. Falusi, M.D., associate medical director of municipal and regional affairs, Child Health Advocacy Institute; Melissa Fleming, M.D., pediatric rehabilitation specialist; William Davis Gaillard, M.D., chief Division of Epilepsy, Neurophysiology and Critical Care; Satvika Garg, Ph.D., occupational therapist; Virginia C. Gebus, R.N., MSN, APN, CNSC, nutritionist; Monika K. Goyal, M.D., MSCE, assistant chief, Division of Emergency Medicine; Andrea Gropman, M.D., chief, Division of Neurodevelopmental Pediatrics and Neurogenetics, geneticist and Neurodevelopmental pediatrician; Mary A. Hadley, BS, senior executive assistant; Susan Keller, MLS., MS-HIT, research librarian; Lauren Kenworthy, Ph.D., director, Center for Autism Spectrum Disorders; Monisha S. Kisling, MS, CGC, genetic counselor; Eyby Leon, M.D., pediatric geneticist; Erin MacLeod, Ph.D., RD, LD, director, Metabolic Nutrition; Margaret B. Menzel, MS, CGC, genetic counselor; Shogo John Miyagi, Ph.D., PharmD, BCPPS, Pediatric Clinical Pharmacology fellow; Mitali Y. Patel, DDS, program director, Pediatric Dentistry; Deborah Potvin, Ph.D., neuropsychologist; Cara E. Pugliese, Ph.D., clinical psychologist; Khodayar Rais-Bahrami, M.D., neonatologist and director, Neonatal-Perinatal Medicine Fellowship Program; Allison B. Ratto, Ph.D., clinical psychologist; Adelaide S. Robb, M.D., chief, Division of Psychiatry and Behavioral Sciences; Joseph Scafidi, D.O., neonatal neurologist; Erik Scheifele, D.M.D., chief, Division of Oral Health; Rhonda L. Schonberg, MS, CGC, genetic counselor; Billie Lou Short, M.D., chief, Division of Neonatology; Kara L. Simpson, MS, CGC, genetic counselor; Anupama Rao Tate, D.M.D., MPH, pediatric dentist; Lisa Tuchman, M.D., MPH, chief, Division of Adolescent and Young Adult Medicine; Johannes N. van den Anker, M.D., Ph.D., FCP, chief, Division of Clinical Pharmacology, Vice Chair of Experimental Therapeutics; Miriam Weiss, CPNP-PC, nurse practitioner; and Tesfaye Getaneh Zelleke, M.D., pediatric neurologist.