Amy J Houtrow

• MD, PhD, MPH
• University of Pittsburgh

Objective: Many individuals with spina bifida myelomeningocele perform poorly on memory tasks, with hippocampal damage a possible mechanism. This study analyzed quantitative hippocampal, amygdala, and ventricular volumes to determine if prenatal surgery reduced the effects of hydrocephalus as a potential mechanism for improved memory performance i...

Children and youth with special health care needs (CYSHCN) are living longer than ever. These advances come with a price: Patients, families, communities, and systems must absorb the challenges of chronic caregiving, including protracted stress and poor mental health. In 2023, the National Academies of Science, Engineering, and Medicine convened th...

Report on experiences accessing health care for people with disabilities in the U.S. Available through the FISA Foundation https://fisafoundation.org/access-to-health-care-initiative/

OBJECTIVE Myelomeningocele (MMC) is a lifelong condition requiring complex multidisciplinary management. Using the National Spina Bifida Patient Registry (NSBPR), the authors tested the association between sociodemographic variables and odds of undergoing neurosurgical procedures. METHODS The authors extracted sociodemographic, clinical, and neuro...

Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children’s hospital in Western Pennsylvania. Partic...

10.1542/6355672441112 Video Abstract PEDS-VA_2024-065776 6355672441112 OBJECTIVE Direct admission (DA) to hospital can reduce emergency department (ED) utilization by bypassing the ED during the admission process. We implemented a DA program across 3 health systems and compared timeliness of care, family experience of care, and post-admission clin...

Background Despite the high prevalence of disability and the frequency with which people with disabilities encounter the health care system, physicians report inadequate knowledge regarding caring for their patients with disabilities. Objective To determine the number and type of disability‐related competencies in the Accreditation Council for Gra...

Date Presented 03/22/24 This scoping review, spanning peer-reviewed and gray literature, summarizes interventions for health equity in children with disabilities and additional marginalized identities. Results from 31 articles inform approaches for promoting health parity. Primary Author and Speaker: Christie Cyktor Contributing Authors: Amy Houtro...

This cross-sectional study examines how disability competencies are addressed in the Accreditation Council for Graduate Medical Education’s milestones for pediatric specialties.

OBJECTIVE To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS Data come from the 2016...

Objective: The aim of this study was to evaluate the predictive accuracy of the Pittsburgh Impairment Testing Tool (PITT). It was hypothesized that PITT would have a good overall accuracy (>80%) for predicting both ambulation and transfer ability and that overall accuracy of PITT would be higher than that of other scales. Design: A retrospective...

Aim To qualitatively assess the impact of disability‐based discrimination in healthcare on the parents of children with medical complexity (CMC). Method In this qualitative study, we conducted in‐depth, semi‐structured interviews with the parents of CMC. Data collection and analysis occurred iteratively; constant comparison methods were used to id...

Objective: To investigate primary care practice ownership and specialist-use patterns for commercially insured children with disabilities. Data sources and study setting: A national commercial claims database and the Health Systems and Provider Database from 2012 to 2016 are the data sources for this study. Study design: This cross-sectional,...

Background and purpose: Short-term results demonstrate that prenatal repair of a myelomeningocele is associated with a reduction in hydrocephalus and an increased likelihood of the reversal of Chiari II malformations compared with postnatal repair. The purpose of this study was to identify the long-term imaging findings at school age among subject...

Background and objectives: Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-bas...

Background: Acute flaccid myelitis (AFM) is a childhood illness characterized by sudden-onset weakness impairing function. The primary goal was to compare the motor recovery patterns of patients with AFM who were discharged home or to inpatient rehabilitation. Secondary analyses focused on recovery of respiratory status, nutritional status, and ne...

OBJECTIVE The purpose of this secondary analysis was to assess the role of hydrocephalus on neurodevelopmental outcomes in a cohort of school-age children enrolled in the Management of Myelomeningocele Study (MOMS) clinical trial. METHODS The sample analyzed in this report consisted of 150 of 183 children aged 5–10 years (mean ± SD 7 years 8 month...

Pediatric rehabilitation medicine (PRM) physicians are subspecialists in the field of physical medicine and rehabilitation trained to promote the health and function of children with disabilities (CWD) across their lifespans. Management strategies employed include prescribing medications, therapy, and adaptive equipment (braces and mobility devices...

Acute flaccid myelitis (AFM) is a “polio-like” neurologic disorder of the spinal cord gray matter characterized by asymmetric, flaccid limb weakness of rapid onset following prodromal viral illness. It has affected the pediatric population of the United States since 2014, but there is a paucity of literature describing the post-acute comprehensive...

Like all children, children with disabilities deserve the fair and just opportunity to be as healthy as possible. There are many barriers to optimal health for children with disabilities. Eliminating health disparities requires removing or minimizing the obstacles that keep children from being healthy. Because pediatric orthopaedic surgeons are oft...

Objective: The purpose of this study was to describe the functional outcomes of hemispherotomy in a pediatric cohort, including impairments, activity limitations, utilization of therapies and medical specialist services, and subsequent surgical intervention. Methods: We conducted a retrospective review of patients who underwent hemispherotomy at...

This commentary is on the original article by Lutz et al. on pages 1105–1111 of this issue.

Childhood obesity prevalence continues to increase, and may be coupled with a rise in rates of chronic conditions tied to obesity. We compared the prevalence and severity of 14 chronic conditions between adolescents aged 10-17 years with and without obesity using the 2018-2019 National Survey of Children's Health (NSCH). Chi square tests assessed d...

Purpose: The objective of this study was to determine how the COVID-19 pandemic impacted the work and compensation of pediatric physiatrists during the first year of the pandemic. Methods: Pediatric physiatrists were surveyed in the spring of 2021 about how the first year of the COVID-19 pandemic impacted their practices as a part of a larger su...

Purpose: The purpose of this study was to evaluate associations of ethnicity and adaptive function with health-related quality of life (HRQOL) in youths with spina bifida myelomeningocele (SBM). Methods: Participants included Hispanic (n = 75) and non-Hispanic White (n = 86) children and adolescents with SBM. Participants completed ratings of ad...

People with disabilities disproportionately experience negative health outcomes. Purposeful analysis of information on all aspects of the experience of disability across individuals and populations can guide interventions to reduce health inequities in care and outcomes. Such an analysis requires more holistic information on individual function, pr...

People with disabilities disproportionately experience negative health outcomes. Purposeful analysis of information on all aspects of the experience of disability across individuals and populations can guide interventions to reduce health inequities in care and outcomes. Such an analysis requires more holistic information on individual function, pr...

Objectives: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. Design: A modified Delphi consensus process. Setting: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation...

Objective Provide an up-to-date description of the well-being of families and caregivers of children with disability and medical complexity at the national level. Methods We performed a secondary analysis of the 2016-19 National Survey of Children's Health and divided the sample based on a child's disability and medical complexity status: children...

Purpose: Assess the effects of stay-at-home orders on access to services utilized by families of children with disabilities (CWD). Methods: Cross-sectional weekly surveys were fielded over four weeks, during which western Pennsylvania was under stay-at-home orders. Respondents were divided into families of CWD (N = 233) or without CWD (N = 1582)...

Objective To assess the number of days that children experienced a healthcare encounter and associations between chronic condition types and healthcare encounters. Methods Retrospective analysis of data from 5,082,231 children ages 0-18 years enrolled in Medicaid during 2017 in 12 U.S. states contained in the IBM Watson Marketscan Medicaid Databas...

Health equity is a key pillar in supporting a future in which CYSHCN enjoy a full life and thrive, as envisioned by experts and community partners who gathered in 2019 and 2020 to develop the Blueprint for Change: Guiding Principles for a System of Services for Children and Youth With Special Health Care Needs and Their Families. However, a variety...

Background: Current scales to measure motor impairment in adults with spina bifida (SB) are limited by their complexity, variable interpretation (i.e., subjectively defined impairment levels), or inclusion of muscles groups that are not always practical to test in a clinical setting. Objectives: A novel motor impairment tool for adults with SB w...

Letters to the editor do not have abstracts, I believe.

Academic promotion is desired by many faculty practicing at academic medical institutions, but the criteria for promotion often appear opaque to many physician faculty. In nearly all cases, evidence of scholarship is required regardless of academic track. Academic advancement can be stymied by unclear expectations, lack of protected time to engage...

Objective To determine the prevalence of poor mental and physical health among mothers of children with special health care needs (CSHCN) and to determine the association between maternal health and the child’s number of special health care needs (SHCN) and severity of ability limitation. Methods We used the combined 2016–2018 National Survey of C...

Background Achieving equitable medical care for people with disabilities is a complex challenge with emphasis often placed on the need for improved physician knowledge and cultural competence. Physical Medicine and Rehabilitation (PM&R) is a specialty dedicated to maximizing patient function, where a focus on working with and learning from patients...

Caregiving encompasses the nurturing, tasks, resources, and services that meet the day-to-day needs of children and youth with special health care needs (CYSHCN) at home. Many gaps exist in the strategies currently offered by the health care system to meet the caregiving needs of CYSHCN. The work of family caregivers of CYSHCN is known to be extens...

INTRODUCTION/HYPOTHESIS: Mechanical ventilation (MV) in the pediatric intensive care unit (PICU) increases risk of stress and pain. PICU standard of care to treat stress and pain is a pharmacologic approach, but this increases risk of poor outcomes (e.g., delirium). Listening to music during MV in adults can decrease stress, pain, and medication us...

OBJECTIVES We describe the change in the percentage of children lacking continuous and adequate health insurance (underinsurance) from 2016 to 2019. We also examine the relationships between child health complexity and insurance type with underinsurance. METHODS Secondary analysis of US children in the National Survey of Children’s Health combined...

Objectives: This study used a Spina Bifida (SB) Electronic Medical Record (EMR) and the National Spina Bifida Patient Registry (NSBPR) to explore the relationship between neurosurgical/orthopedic surgeries and other variables on ambulation and transfer ability over time in individuals with SB. Design: This study was an analysis of longitudinal d...

The field of physical medicine and rehabilitation mourns the death of Margaret Grace Stineman, MD. She was an incredibly productive researcher who helped to shape the delivery of rehabilitation care. She was a trusted colleague, mentor, and friend to many. Her outstanding accomplishments were acknowledged by her numerous awards and her election int...

This clinical report updates a 2006 report from the American Academy of Pediatrics titled "Sexuality of Children and Adolescents With Developmental Disabilities." The development of a healthy sexuality best occurs through appropriate education, absence of coercion and violence, and developmental acquisition of skills to navigate feelings, desires,...

Introduction: Depressive risk is higher for mothers of infants with chronic medical conditions. The present study examined maternal depressive risk and associations with parent and child outcomes among mothers of young children who were randomized to either prenatal or postnatal surgical closure for myelomeningocele. Methods: Using the Managemen...

Objective – Pediatric complex care centers are an increasingly common approach to address the needs of children with medical complexity (CMC). We sought to better understand CMC caregivers’ perceptions of what constitutes high-quality care at a complex care center. Methods – We conducted a cross-sectional qualitative study of family caregivers of...

The authors describe the disparities and increased risk of traumatic spinal cord injury Black Americans face as a result of violence. The manuscript should serve as a realization of these inequities and as a call to action to improve the equity of rehabilitation services in this population to improve outcomes.

Background/Objective Pediatric neurocritical care survivorship is frequently accompanied by functional impairments. Lack of prognostic biomarkers is a barrier to early identification and management of impairment. We explored the association between blood biomarkers and functional impairment in children with acute acquired brain injury.Methods This...

Importance: The Management of Myelomeningocele Study (MOMS), a randomized clinical trial of prenatal vs standard postnatal repair for myelomeningocele, found that prenatal repair reduced hydrocephalus and hindbrain herniation and improved motor function in children aged 12 to 30 months. The Management of Myelomeningocele Study Follow-up (MOMS2) wa...

Background Children with medical complexity (CMC) represent a growing population with high emergency department (ED) utilization. How to reduce preventable ED visits is poorly understood. Objective We sought to determine what components of ambulatory care programs focused on CMC were most effective in preventing ED visits. Data Sources PubMed Plu...

Background: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. Methods: This longitudinal analysis included 6229 children born in 2009 and continuously enrol...

Objectives: To develop a method of identifying children with medical complexity (CMC) from the National Survey of Children's Health (NSCH) 2016-2017 combined data set, to compare this approach to existing CMC identification strategies, and to describe sociodemographic characteristics of our CMC sample. Methods: Using survey items pertinent to th...

Objectives: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. Patients and methods: Secondary analysis of children in the National Survey of Children's Health combined 2016-2017 dat...

Background Training opportunities to pursue a career in pediatric rehabilitation medicine (PRM) have evolved over the last 40 years with the most recent change being the development and accreditation of PRM fellowships and subspecialty certification in PRM. Currently the ABPMR requires all candidates for PRM subspecialty certification to have compl...

Optimal healthcare quality can be defined as the provision of safe and effective care that improves outcomes, optimizes health, results in higher patient satisfaction, and furthers quality of life. The focus of healthcare worldwide has shifted from the fee-for-services model in which healthcare services rendered were rewarded in terms of volume to...

Sexual development is not only comprised of the changes to a person’s body during puberty; it is a part of social development and should be considered in the context of basic and routine human desires for connectedness and intimacy, beliefs, values and aspirations. As is true for everyone, it is important that individuals with spina bifida have opp...

Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL...

Accurate identification of children with disabilities is clearly a priority in multiple contexts, including measurement of health care inequities, programmatic planning, and addressing resource allocation. Yet the definitions of disability used in research, clinical, and policy-making settings vary substantially by how disability is conceptualized....

Children with disabilities are disproportionately impacted by COVID-19 and the containment response. Their caregivers must now adapt to increased stressors such as lack of access to needed therapies, medical supplies, and nursing care. Prior to COVID-19 these families were already marginalized, and this has only worsened during the pandemic. As a v...

Over 80% of the children in the world have had their education impacted by COVID-19. For children with disabilities who receive special education services, access to in-person education and other resources at school is particularly important. The American Academy of Pediatrics advocates for students to attend school in person, without specifics for...

The field of Physical Medicine and Rehabilitation mourns the death of Margaret Grace Stineman, MD. She was an incredibly productive researcher who help shape the delivery of rehabilitation care. She was trusted colleague, mentor and friend to many. Her outstanding accomplishments were acknowledged by her numerous awards and election into honorary s...

Objective To identify the specific features that contribute to the variability in baseline wheelchair transfer and the changes in transfer ability (gain or loss) over time for a large cohort of patients with spina bifida (SB) in the National Spina Bifida Patient Registry (NSBPR). Design Longitudinal cohort study. Setting 35 United States outpatie...

During public health crises including the COVID-19 pandemic, resource scarcity and contagion risks may require health systems to shift—to some degree—from a usual clinical ethic, focused on the well-being of individual patients, to a public health ethic, focused on population health. Many triage policies exist that fall under the legal protections...

This commentary is on the original article by Dorner et al. on pages 500–505 of this issue.

Nationally representative data of 140 000 children in 2-parent households showed that fathers were more likely than mothers to report that a child was in good health and less likely to report the presence of a specific health condition, special health care needs, or unmet health service needs.

Objective: Evidence is limited regarding clinical factors associated with ambulation status over the lifespan of individuals with myelomeningocele (MMC). We used longitudinal data from the National Spina Bifida Patient Registry to model population-level variation in ambulation over time and hypothesized that effects of clinical factors associated...

Background and objectives: The Management of Myelomeningocele Study (MOMS), a randomized trial of prenatal versus postnatal repair for myelomeningocele, found that prenatal surgery resulted in reduced hindbrain herniation and need for shunt diversion at 12 months of age and better motor function at 30 months. In this study, we compared adaptive be...

Objective: The aim of the study was to identify which neurologic impairment scales correlate with ambulation status in adults with spina bifida. Design: A retrospective chart review was performed on patients seen at the University of Pittsburgh Medical Center Adult Spina Bifida Clinic. Findings were graded using several neurologic impairment sca...

Objective: To assess if gender inequities exist for pediatric physiatrists and, if affirmative, what factors account for this difference. Design: Cohort study SETTING: Online REDCap survey administered via email. Participants: Pediatric physiatrists practicing in the United States in 2017. Interventions: Not applicable. Main outcome measure...

Objective: IPV prevention among adolescent patients with disability is needed, yet rarely discussed in the clinical setting. This study evaluated the feasibility of implementing a brief educational training based on an evidence-based intimate partner violence (IPV) intervention in a pediatric spina bifida clinic. Frequency of IPV discussion was as...

Objective: The Supplemental Security Income (SSI) program for children with disabilities has come under recent public and political scrutiny. We sought to determine if children with special health care needs (CSHCN) on Medicaid/SCHIP who receive SSI for disability were more severely impacted by their health conditions compared to other CSHCN on Me...