Day 1 – Wednesday, March 22, 2023

An Introduction on the Cognitive Orientation to Daily Occupational Performance (CO-OP)TM Approach and Its Application for People, Both Children and Adults, with Spina Bifida – Enabling performance success in occupations of everyday living: The CO-OP ApproachTM – Marie Peny-Dahlstrand, Reg. OT

Transition to Adult Care and Independence Throughout the Lifespan

Transition to Adult Care and Independence Throughout the Lifespan – STEP Program: Staging Transition for Every Patient – Betsy Hopson, MHA

Transition to Adult Care and Independence Throughout the Lifespan – Adult Transition at Arnold Palmer – Orlando Health Spina Bifida Program – Shannon Bevans, LCSW

Transition to Adult Care and Independence Throughout the Lifespan Pre-Conference Session – Cincinnati Children’s Spina Bifida
Center – Transition to Adult Health Care – Ellen Fremion, MD (moderator); Colleen Payne, MRC, CRC; Shannon Bevans, LCSW; Monica Still, RN; Betsy Hopson, MHA; Jason Woodward, MD

Transition to Adult Care and Independence Throughout the Lifespan Pre-Conference Session – How Home Healthcare Can Aid Transition – Ellen Fremion, MD (moderator); Colleen Payne, MRC, CRC; Shannon Bevans, LCSW; Monica Still, RN; Betsy Hopson, MHA; Jason Woodward, MD

 

Day 2 – Thursday, March 23, 2023

Neurosurgery

Intra-Uterine Closure of Myelomeningocele Defects with Primary Linear Repair Versus Bipedicle Fasciocutaneous Flaps: A Post-Moms Cohort Study with Long-Term Follow Up – Morgan Kane, OTR/L

Evaluation of Multidisciplinary High-Risk Pregnancy Clinic – Luke Anderson

Treatment of Sleep Disordered Breathing in Children with Myelomeningocele – Addison Stewart B.S.

First-Time Tethered Cord Release Among Adults with Myelomeningocele: An Analysis of People in the National Spina Bifida Registry – Mark S. Dias, MD, FAANS, FAAP

Adult Patients with Occult Spinal Dysraphism Experience Chronic but Not Acute Pain at High Rate – Pedram Maleknia, MBA

Mental Health and Weight Related Behaviors

Exploring the Complexities of Weight Management Care for Youth with Spina Bifida – Amy McPherson, PhD

Weight Cycling in Pediatric Spina Bifida: A Pilot Study – Caroline Caudill, BS

Weight Status of Children Participating in the National Spina Bifida Patient Registry – Michele Polfuss, PhD, RN, CPNP-AC/PC, FAAN

Resilience Factors in Pediatric Spina Bifida – Tess Simpson, Ph.D.

General Science/Epidemiology/Public Health

Estimating prevalence of Spina Bifida in the US Using Administrative Databases – Julie Bershadsky, PhD

Bracing and Ambulatory Status in L3 Motor Level Myelomeningocele – Janet Jackson-Coty, PT, DPT

Urology

Validity of Repeated Urodynamics in Infants with Spina Bifida Within 6 Months Without Initiation of Anticholinergic Therapy – Mickey Daugherty, MD, MHI

General Pediatrics

Fostering Independence Through Creation of a Skills Clinic – Paula Peterson, APRN

Establishing the First Community-Centered Spina Bifida Research Agenda – Maryellen Kelly, DNP, CPNP, MHSc

Orthopedics / Physical Therapy / Occupational Therapy

Maximizing Ambulatory Potential in Spina Bifida – Samuel R. Rosenfeld, M.D.

Sub-Laminar Polyester Band Fixation Construct in the Treatment of Neuromuscular Scoliosis – Samuel R. Rosenfeld, M.D.

Plenary Sessions

Spina Bifida Association Update – Sara Struwe, MPA, President and CEO

Planes, Trains, and Automobiles: Access to and Organization of Prenatal Surgery, an International Perspective – Antenatal repair of spina bifida aperta (SBA) in the context of a national health service –  Jan Deprest, MD

Planes, Trains, and Automobiles: Access to and Organization of Prenatal Surgery, an International Perspective – Examining Health Equity in Maternal-Fetal Surgery – Abigail Wilpers, PhD, WHNP-BC

 

Day 3 – Friday, March 24, 2023

Self Management/Quality of Life

Pain and Pain Interference Among People with Spina Bifida: Association with Quality of Life –KA Freeman, T Liu, H Wood, K Smith, B Hopson, J Castillo, BE Dicianno, J Woodward, LE Krach, E Ward, K Sawin

Association Between Self-Reported Quality of Life and Demographic and Condition-Specific Variables in a Large Sample of Patients with Spina Bifida – Kurt Freeman, PhD, ABPP

Transition

Does a Dedicated Transition Process Impact Patient Experience in an Adult Spina Bifida Clinic? – Victoria Jiminez

The Impact of a Health Care Transition Program on Post-Transfer Chronic Care Management and Utilization for Young Adults with Spina Bifida – Ellen Fremion, MD, FACP, FAAP

Urology

Patient Perspectives on Clinical Communication about Sex and Sexual Function in Young Men with Spina Bifida – James Rague, MD

National Survey Among Cather Users: Examining Catheter Usage and Coverage by Health Plan – Maryellen Kelly, DN, CPNP, MHSc

Comparison of Quality of Life and Bladder Symptoms in Adolescents and Young Adults with Spina Bifida Who Catheterize Via Urethra Versus Cathererizable Channel – Josephine Hirsch

Who is Managing the Bowels? A Survey of Clinical Practice Patterns in Spina Bifida Clinics – Maryellen Kelly, DNP, CPNP, MHSc

Utilization of a Patient Portal Questionnaire in the Pediatric Spina Bifida Population to Capture NSBPR Data Points – Mickey Daugherty, MD, MHI

Cystatin C-based Estimated Glomerular Filtration Rate Equation Has Higher Sensitivity in Detection of Kidney Dysfunction Than Equations Containing Creatinine in Spina Bifida and Other Non-Weight Bearing Conditions – Hadley Wood, MD

Comparing Binary & Ordinal Definitions of Urinary and Stool Continence Outcomes: Data from the National Spina Bifida Patient Registry – Maryellen Kelly, DNP, CPNP, MHSc

General Pediatrics

Prevalence and Characteristics Associated with Sleep Disordered Breathing in Patients with Spina Bifida – Jason Woodward, MD MS

Treatment of Sleep Disordered Breathing in Individuals with Spina Bifida – Jason F Woodward, MD MS

COVID-19 Vaccination in Individuals with Spina Bifida – Maryellen Kelly, DNP, CPNP, MHSc

Neurosurgery

Long-Term Outcomes Among People with Lipomyelomeningocele (LMM): An Analysis From the National Spina Bifida Patient Registry (NSBPR) – Mark Dias, MD

Prevalence of ADHD in a Pediatric Hydrocephalus Prospective Sample – Pedram Maleknia, MBA

Neuropsychology

Access to Neuropsychology Care for Patients with Spina Bifida in the United States – Rosalie Costello, PsyD

Neurodevelopment Outcome in Infants with Spina Bifida Myelomeningocele Undergoing Endoscopic Third Ventriculostomy Combined with Choroid Plexus Cauterization for Hydrocephalus: A Single Center Experience – Jennifer Queally, PhD

Adult Care/Aging/Sexuality

Survival and Causes of Death in Adults with Spina Bifida in Sweden: A Population-Based Case-Control Study – Melinda Rocchi, MD

Plenary Sessions
Mental Health Challenges in Youth and Adults with Spina Bifida: What We Know and Where We Go From Here – Tessa K. Kritikos, Ph.D.,Raynie Leard, M.S., Sharron L. Docherty, PhD, PNP, RN, FAAN

Mental Health Challenges in Youth and Adults with Spina Bifida: What We Know and Where We Go From Here – Sharron L. Docherty, PhD, PNP, RN, FAAN

Mental Health Challenges in Youth and Adults with Spina Bifida: What We Know and Where We Go From Here – The Landscape of Mental Health in Youth with Spina Bifida: How the Peaks & Valleys Can Inform Future Interventions – Raynie Leard, M.S., Tessa K. Kritikos, M.S.

Leveraging Evidence and Innovation to Empower Self-Management Across the Life Span – The Development of Self-Management in Youth with Spina Bifida: Predictors and Interventions – Andy Zabel

Leveraging Evidence and Innovation to Empower Self-Management Across the Life Span – Sharon Levy, RN, SFHEA

Leveraging Evidence and Innovation to Empower Self-Management Across the Life Span – To consider an Occupational Therapy perspective on self-management – Marie Peny-Dahlstrand, Reg. OT

Educational Program for Self-management on Adolescents with Spina Bifida – Marie Isabel Dias de Costa Malheiro, RN, PhD

Day 4 – Saturday, March 25, 2023

Plenary Sessions

The Relationship Between Self-Determination and Well-Being in Adults with Spina Bifida – Karlin Bruegel, Ph.D.

Expanding the Role of Neuropsychology in Spina Bifida Clinics: Implications for Medical Decision-Making Adult Transition, and Beyond – Jennifer T. Queally, PhD