Pediatrics Commons^™

Containment Measures During The Covid Pandemic: The Role Of Non-Pharmaceutical Health Policies, Michael Funke, Tai-Kuang Ho, Andrew Tsang

Faculty, Staff and Student Publications

Many countries have imposed a set of non-pharmaceutical health policy interventions in an effort to slow the spread of the COVID-19 pandemic. The objective of this paper is to examine the effects of the interventions, drawing on evidence from the OECD countries. A special feature here is the mechanism that underlies the impact of the containment policies. To this end, a causal mediation analysis decomposing the total effect into a direct and an indirect effect is conducted. The key finding is a dual cause-effect channel. On the one hand, there is a direct effect of the non-pharmaceutical interventions on the …

Family-Level Antecedents Of Children's Patterns Of Reactivity To Interparental Conflict: Testing The Reformulation Of Emotional Security Theory, Patrick T Davies, Joanna K Pearson, Vanessa T Cao, Melissa L Sturge-Apple

Faculty, Staff and Student Publications

Guided by emotional security theory, this study examined the family-level antecedents of children's reaction patterns to interparental conflict in a sample of 243 preschool children (M age = 4.60 years; 48% Black; 16% Latinx; 56% girls) and their parents in the Northeastern United States. Behavioral observations of children's responses to interparental conflict over two annual measurement occasions assessed their tendencies to exhibit four patterns of defending against threat: secure (i.e., efficiently address direct threats), mobilizing (i.e., high reactivity to potential threat and social opportunities), dominant (i.e., directly defeat threat), and demobilizing (i.e., reduce salience as a target of hostility). …

Deep Brain Stimulation For Pediatric Dystonia: Clinicians' Perspectives On The Most Pressing Ethical Challenges, Kristin M Kostick-Quenet, Lavina Kalwani, Laura N Torgerson, Katrina Munoz, Clarissa Sanchez, Eric A Storch, J S Blumenthal-Barby, Gabriel Lazáro-Muñoz

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Pediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.

Methods: Clinicians (n = 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.

Results: Using thematic content analysis to explore salient themes, clinicians identified four pressing concerns: (1) uncertainty about risks and benefits of pDBS …

Modeling Suicidality With Multimodal Impulsivity Characterization In Participants With Mental Health Disorder, Nidal Moukaddam, Bishal Lamichhane, Ramiro Salas, Wayne Goodman, Ashutosh Sabharwal

Faculty, Staff and Students Publications

INTRODUCTION: Suicide is one of the leading causes of death across different age groups. The persistence of suicidal ideation and the progression of suicidal ideations to action could be related to impulsivity, the tendency to act on urges with low temporal latency, and little forethought. Quantifying impulsivity could thus help suicidality estimation and risk assessments in ideation-to-action suicidality frameworks.

METHODS: To model suicidality with impulsivity quantification, we obtained questionnaires, behavioral tests, heart rate variability (HRV), and resting state functional magnetic resonance imaging measurements from 34 participants with mood disorders. The participants were categorized into three suicidality groups based on their …

Participant Perceptions Of Changes In Psychosocial Domains Following Participation In An Adaptive Deep Brain Stimulation Trial, Amanda R Merner, Kristin Kostick-Quenet, Tiffany A Campbell, Michelle T Pham, Clarissa E Sanchez, Laura Torgerson, Jill Robinson, Stacey Pereira, Simon Outram, Barbara A Koenig, Philip A Starr, Aysegul Gunduz, Kelly D Foote, Michael S Okun, Wayne Goodman, Amy L Mcguire, Peter Zuk, Gabriel Lázaro-Muñoz

Faculty, Staff and Students Publications

BACKGROUND: There has been substantial controversy in the neuroethics literature regarding the extent to which deep brain stimulation (DBS) impacts dimensions of personality, mood, and behavior.

OBJECTIVE/HYPOTHESIS: Despite extensive debate in the theoretical literature, there remains a paucity of empirical data available to support or refute claims related to the psychosocial changes following DBS.

METHODS: A mixed-methods approach was used to examine the perspectives of patients who underwent DBS regarding changes to their personality, authenticity, autonomy, risk-taking, and overall quality of life.

RESULTS: Patients (n = 21) who were enrolled in adaptive DBS trials for Parkinson's disease, essential tremor, obsessive-compulsive …

Prefrontal Network Engagement By Deep Brain Stimulation In Limbic Hubs, Anusha Allawala, Kelly R Bijanki, Denise Oswalt, Raissa K Mathura, Joshua Adkinson, Victoria Pirtle, Ben Shofty, Meghan Robinson, Matthew T Harrison, Sanjay J Mathew, Wayne K Goodman, Nader Pouratian, Sameer A Sheth, David A Borton

Faculty, Staff and Students Publications

Prefrontal circuits in the human brain play an important role in cognitive and affective processing. Neuromodulation therapies delivered to certain key hubs within these circuits are being used with increasing frequency to treat a host of neuropsychiatric disorders. However, the detailed neurophysiological effects of stimulation to these hubs are largely unknown. Here, we performed intracranial recordings across prefrontal networks while delivering electrical stimulation to two well-established white matter hubs involved in cognitive regulation and depression: the subcallosal cingulate (SCC) and ventral capsule/ventral striatum (VC/VS). We demonstrate a shared frontotemporal circuit consisting of the ventromedial prefrontal cortex, amygdala, and lateral orbitofrontal …

A Systematic Review Of Treatments For Misophonia, Seth A Mattson, Johann D'Souza, Katharine D Wojcik, Andrew G Guzick, Wayne K Goodman, Eric A Storch

Faculty, Staff and Students Publications

Research into misophonia treatments has been limited and it is unclear what treatment approaches may be effective. This systematic review extracted and synthesized relevant treatment research on misophonia to examine the efficacy of various intervention modalities and identify current trends in order to guide future treatment research. PubMed, PsycINFO, Google Scholar, and Cochrane Central were searched 4using the keywords "misophonia," "decreased sound tolerance," "selective sound sensitivity," or "decreased sound sensitivity." Of the 169 records available for initial screening, 33 studied misophonia treatment specifically. Data were available for one randomized controlled trial, one open label trial, and 31 case studies. Treatments …

Description Of Audiologic, Developmental, Ophthalmologic, And Neurologic Diagnoses At A Primary Care Clinic For Children In Foster Care, Jill Mcleigh, Lauren Malthaner, Melissa Reynoso, Kimberly Stone

Health Status, Outcomes, and Literacy and Healthcare Utilization

This study aimed to describe the prevalence of medically diagnosed audiologic, developmental, ophthalmologic, and neurologic conditions in a foster care primary care clinic and to identify any associations among these diagnoses and patient characteristics, placement type, and maltreatment type.

For questions about this study or others, please email [email protected]

childrens.com/fostercare

Clinical And Demographic Factors Contributing To Asparaginase-Associated Toxicities In Children With Acute Lymphoblastic Leukemia, Priyadarshani Dharia, Michael D Swartz, M Brooke Bernhardt, Han Chen, M Monica Gramatges, Philip J Lupo, Austin L Brown, Michael E Scheurer

Center for Medical Ethics and Health Policy Staff Publications

A total of 548 patients (age range: 1-22 years, 60.4% Hispanic, 55.8% male) diagnosed with acute lymphoblastic leukemia were reviewed for pegaspargase-associated hypersensitivity (14.8%), hyperbilirubinemia (9.7%), venous thromboembolism (VTE, 9.7%), and pancreatitis (5.3%). Odds ratios (OR) and 95% confidence intervals (CI) evaluated associations between clinical factors and each toxicity, cumulative number of toxicities, and toxicity clusters identified using k-mode analysis. Most (68.9%) did not experience any toxicity, 24.6% experienced one toxicity, and 6.3% two or more. Age >10 years was associated with hyperbilirubinemia (OR = 3.83; 95% CI: 1.64-8.95), pancreatitis (OR = 3.72; 95% CI: 1.29-10.68), VTE (OR = 4.65; …

Professional Perspectives On Bilingualism In Persons With Autism Spectrum Disorder: A Pilot Study, Rosa N. Benavidez Saldivar, Jessica R. Stewart, Ruth Crutchfield, Roy K. Chen, Lily Puente

Internet Journal of Allied Health Sciences and Practice

Purpose: The present study examined the perspectives of professionals regarding bilingualism and ASD. Methods: A total of 27 professionals participated in this study. Data was collected via an online survey. The survey was designed based on a literature review and consultation with a team of experts in the field of ASD. Information relating to demographic information, professional practice information, and perspectives of bilingualism and ASD was collected. Results: Professionals participating in the present study were most likely to agree with the statement, “A child with ASD from a bilingual household is able to understand both languages” and least likely to …

Psychometric Properties Of The Sindhi Version Of The Mood And Feelings Questionnaire (Mfq) In A Sample Of Early Adolescents Living In Rural Pakistan, Janavi Shetty, Florence Perquier, Susan C. Campisi, Yaqub Wasan, Madison Aitken, Daphne J. Korczak, Suneeta Monga, Sajid Bashir Soofi, Peter Szatmari, Zulfiqar Ahmed Bhutta

Centre of Excellence in Women and Child Health

There is a need for reliable and valid screening tools that assess depressive symptoms in adolescents in Pakistan. To address this need, the present study examined the psychometric properties and factor structure of a Sindhi-translated and adapted version of the child-report Mood and Feelings Questionnaire (MFQ-C) and the Short Mood and Feelings Questionnaire (SMFQ-C) in a community sample of adolescents living in Matiari, Pakistan. Questionnaires were translated into Sindhi and administered by study psychologists to 1350 participants (52.3% female) 9.0 to 15.9 years old. Measurement structure was examined using confirmatory factor analysis. Internal consistency was estimated, and convergent and divergent …

Safety Analysis Of High-Dose Methotrexate In Pediatric Non-Hodgkin Lymphomas, M Brooke Bernhardt, Austin L Brown, Austyn T Grim, Michael E Scheurer, Nader Kim El-Mallawany, Nmazuo W Ozuah

Center for Medical Ethics and Health Policy Staff Publications

High-dose methotrexate (HD-MTX) with rigorous supportive care is essential to the treatment of pediatric non-Hodgkin lymphomas (NHL). We describe the safety and tolerability of HD-MTX in patients with NHL treated at our center. In our cohort of 46 patients, the majority had at least one course of delayed clearance and/or creatinine elevation. Additionally, more than one-third of patients experienced an episode of grade ≥3 mucositis. Creatinine elevations and delayed clearance were independently associated with subsequent grade ≥3 mucositis. We advocate for greater availability of methotrexate monitoring to allow dose escalation of this essential modality around the world.

A Multinational Delphi Consensus To End The Covid-19 Public Health Threat, Jeffrey V Lazarus, Diana Romero, Christopher J Kopka, Salim Abdool Karim, Laith J Abu-Raddad, Gisele Almeida, Ricardo Baptista-Leite, Joshua A Barocas, Mauricio L Barreto, Yaneer Bar-Yam, Quique Bassat, Carolina Batista, Morgan Bazilian, Shu-Ti Chiou, Carlos Del Rio, Gregory J Dore, George F Gao, Lawrence O Gostin, Margaret Hellard, Jose L Jimenez, Gagandeep Kang, Nancy Lee, Mojca Matičič, Martin Mckee, Sabin Nsanzimana, Miquel Oliu-Barton, Bary Pradelski, Oksana Pyzik, Kenneth Rabin, Sunil Raina, Sabina Faiz Rashid, Magdalena Rathe, Rocio Saenz, Sudhvir Singh, Malene Trock-Hempler, Sonia Villapol, Peiling Yap, Agnes Binagwaho, Adeeba Kamarulzaman, Ayman El-Mohandes

Faculty, Staff and Students Publications

Despite notable scientific and medical advances, broader political, socioeconomic and behavioural factors continue to undercut the response to the COVID-19 pandemic1,2. Here we convened, as part of this Delphi study, a diverse, multidisciplinary panel of 386 academic, health, non-governmental organization, government and other experts in COVID-19 response from 112 countries and territories to recommend specific actions to end this persistent global threat to public health. The panel developed a set of 41 consensus statements and 57 recommendations to governments, health systems, industry and other key stakeholders across six domains: communication; health systems; vaccination; prevention; treatment and …

Does Attention-Deficit/Hyperactivity Disorder Increase The Risk Of Minor Blunt Head Trauma In Children?, Murat Pakyurek, Mohamed Badawy, Irma T Ugalde, Paul Ishimine, Pradip P Chaudhari, Kevan Mccarten-Gibbs, Ozra Nobari, Nathan Kuppermann, James F Holmes

Faculty, Staff and Student Publications

PROBLEM: It is unclear if attention-deficit hyperactivity disorder (ADHD) increases the risk of head trauma in children.

METHODS: We conducted a multicenter prospective observational study of children with minor blunt head trauma. Guardians were queried, and medical records were reviewed as to whether the patient had previously been diagnosed with ADHD. Enrolled patients were categorized based on their mechanism of injury, with a comparison of those with motor vehicle collision (MVC) versus non-MVC mechanisms.

FINDINGS: A total of 3410 (84%) enrolled children had ADHD status available, and 274 (8.0%; 95% confidence interval, CI: 7.1, 9.0%) had been diagnosed with ADHD. …

Covid-19, Nutrition, And Gender: An Evidence-Informed Approach To Gender-Responsive Policies And Programs, Anna Kalbarczyk, Noora-Lisa Aberman, Bregje S M Van Asperen, Rosemary Morgan, Zulfiqar Ahmed Bhutta, Bianca Carducci, Rebecca Heidkamp, Saskia Osendarp, Neha Kumar, Anna Lartey

Department of Paediatrics and Child Health

In addition to the direct health impacts of COVID-19, government and household mitigation measures have triggered negative indirect economic, educational, and food and health system impacts, hitting low-and middle-income countries the hardest and disproportionately affecting women and girls. We conducted a gender focused analysis on five critical and interwoven crises that have emerged because of the COVID-19 crisis and exacerbated malnutrition and food insecurity. These include restricted mobility and isolation; reduced income; food insecurity; reduced access to essential health and nutrition services; and school closures. Our approach included a theoretical gender analysis, targeted review of the literature, and a visual …

Nurturing Children’S Development Through Healthy Eating And Active Living: Time For Policies To Support Effective Interventions In The Context Of Responsive Emotional Support And Early Learning, Helen Skouteris, Rachael Green, Alexandra Chung, Heidi Bergmeier, Lisa H Amir, Sukhpreet Kaur Baidwan, Angel Marie Chater, Catherine Chamberlain, Ruth Emond, Kay Gibbons, Michelle Gooey, Kostas Hatzikiriakidis, Emma Haycraft, Andrew P Hills, Daryl J Higgins, Oliver Hooper, Sue-Anne Hunter, Pam Kappelides, Sue Kleve, Jacynta Krakouer, Julie C Lumeng, Yannis Manios, Athar Mansoor, Michael Marmot, Louise C Mâsse, Karen Matvienko-Sikar, Zandile June-Rose Mchiza, Caroline Meyer, George Moschonis, Emily R Munro, Teresia Margareta O'Connor, Adrienne O'Neil, Thomas Quarmby, Rachel Sandford, Janet U Schneiderman, Simone Sherriff, Doug Simkiss, Alison Spence, Elizabeth Sturgiss, Dave Vicary, Rebecca Wickes, Luke Wolfenden, Mary Story, Maureen M Black

Faculty, Staff and Students Publications

Fostering the growth, development, health, and wellbeing of children is a global priority. The early childhood period presents a critical window to influence lifelong trajectories, however urgent multisectoral action is needed to ensure that families are adequately supported to nurture their children's growth and development. With a shared vision to give every child the best start in life, thus helping them reach their full developmental potential, we have formed the International Healthy Eating Active Living Matters (HEALing Matters) Alliance. Together, we form a global network of academics and practitioners working across child health and development, and who are dedicated to …

Residence In A Latinx Enclave And End-Induction Minimal Residual Disease Positivity Among Children With Acute Lymphoblastic Leukemia, Joshua P Muñiz, John P Woodhouse, Amy E Hughes, Sandi L Pruitt, Karen R Rabin, Michael E Scheurer, Philip J Lupo, Jeremy M Schraw

Center for Medical Ethics and Health Policy Staff Publications

Racial and ethnic inequities in survival persist for children with acute lymphoblastic leukemia (ALL). In the US, there are strong associations between SES, race/ethnicity, and place of residence. This is evidenced by ethnic enclaves: neighborhoods with high concentrations of ethnic residents, immigrants, and language isolation. The Latinx enclave index (LEI) can be used to investigate how residence in a Latinx enclave is associated with health outcomes. We studied the association between LEI score and minimal residual disease (MRD) in 142 pediatric ALL patients treated at Texas Children's Hospital. LEI score was associated with end-induction MRD positivity (OR per unit increase …

Incidence And 5-Year Survival Of Children And Adolescents With Hepatoblastoma In The United States, Justin A Kahla, David A Siegel, Shifan Dai, Philip J Lupo, Jennifer H Foster, Michael E Scheurer, Andras A Heczey

Center for Medical Ethics and Health Policy Staff Publications

Objective: Hepatoblastoma (HB) is the most common pediatric primary malignant liver tumor, its incidence has been increasing worldwide, but recent changes in incidence and outcomes with high population coverage are not well characterized.

Methods: We defined the incidence of HB diagnosed during 2003-2017 from United States Cancer Statistics (USCS) database, and survival during 2001-2016 from the National Program of Cancer Registries (NPCR). Data were stratified by sex, race/ethnicity, age, tumor stage, county population, and diagnosis year. Incidence trends were assessed by calculating average annual percent change (AAPC) using Joinpoint regression. Differences in overall 5-year survival were estimated using Cox regression …

A Novel Approach To Assessment Of Us Pediatric Trauma System Development., Mary E. Fallat, Colin Traeger, Sophie Humphrey, Lindsey Gumer, Kahir Jawad, Elissa Butler, Frederick B. Rogers, Frederick P. Rivara, Amelia T. Collings

Faculty and Staff Scholarship

Importance Mature trauma systems are critical in building and maintaining national, state, and local resilience against all-hazard disasters. Currently, pediatric state trauma system plans are not standardized and thus are without concrete measures of potential effectiveness.

Objective To develop objective measures of pediatric trauma system capability at the state level, hypothesizing significant variation in capabilities between states, and to provide a contemporary report on the status of national pediatric trauma system planning and development.

Design, Setting, and Participants A national survey was deployed in 2018 to perform a gap analysis of state pediatric trauma system capabilities. Four officials from each …

Covid-19 And Children, Carl A Pierce, Kevan C Herold, Betsy C Herold, Janet Chou, Adrienne Randolph, Binita Kane, Sammie Mcfarland, Deepti Gurdasani, Christina Pagel, Peter Hotez, Sarah Cobey, Scott E Hensley

Center for Medical Ethics and Health Policy Staff Publications

There has been substantial research on adult COVID-19 and how to treat it. But how do severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections afflict children? The COVID-19 pandemic has yielded many surprises, not least that children generally develop less severe disease than older adults, which is unusual for a respiratory disease. However, some children can develop serious complications from COVID-19, such as multisystem inflammatory syndrome in children (MIS-C) and Long Covid, even after mild or asymptomatic COVID-19. Why this occurs in some and not others is an important question. Moreover, when children do contract COVID-19, understanding their role in …

Paediatric Integrated Care In The Primary Care Setting: A Scoping Review Of Populations Served, Models Used And Outcomes Measured, Jill Mcleigh, Lauren Malthaner, Caitlin Winebrenner, Kimberly Stone

Integrated, Trauma-Informed Care

Paediatric integrated care (PIC), which involves primary care and behavioural health clinicians working together with patients and families, has been promoted as a best practice in the provision of care. In this context, behavioural health includes behavioural elements in the care of mental health and substance abuse conditions, chronic illness and physical symptoms associated with stress, and addressing health behaviours.

For questions about this study or others, please email [email protected]

childrens.com/fostercare

Rates Of Laboratory Adverse Events By Course In Paediatric Leukaemia Ascertained With Automated Electronic Health Record Extraction: A Retrospective Cohort Study From The Children’S Oncology Group, Tamara P Miller, Kelly D Getz, Yimei Li, Biniyam G Demissei, Peter C Adamson, Todd A Alonzo, Evanette Burrows, Lusha Cao, Sharon M Castellino, Marla H Daves, Brian T Fisher, Robert Gerbing, Robert W Grundmeier, Edward M Krause, Judy Lee, Philip J Lupo, Karen R Rabin, Mark Ramos, Michael E Scheurer, Jennifer J Wilkes, Lena E Winestone, Douglas S Hawkins, M Monica Gramatges, Richard Aplenc

Center for Medical Ethics and Health Policy Staff Publications

Background: Adverse events are often misreported in clinical trials, leading to an incomplete understanding of toxicities. We aimed to test automated laboratory adverse event ascertainment and grading (via the ExtractEHR automated package) to assess its scalability and define adverse event rates for children with acute myeloid leukaemia and acute lymphoblastic leukaemia.

Methods: For this retrospective cohort study from the Children's Oncology Group (COG), we included patients aged 0-22 years treated for acute myeloid leukaemia or acute lymphoblastic leukaemia at Children's Healthcare of Atlanta (Atlanta, GA, USA) from Jan 1, 2010, to Nov 1, 2018, at the Children's Hospital of Philadelphia …

Stepped Care Versus Standard Care For Children After Trauma: A Randomized Non-Inferiority Clinical Trial, Alison Salloum, Yuanyuan Lu, Henian Chen, Troy Quast, Judith A Cohen, Michael S Scheeringa, Kristen Salomon, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Trauma-focused cognitive-behavioral therapy (TF-CBT) is an evidence-based therapist-led treatment for children after trauma. Parents often experience barriers to treatment engagement, including cost. Stepped care TF-CBT (SC-TF-CBT) was developed as an alternative delivery system. Step One is a parent-led therapist-assisted treatment. Step Two provides therapist-led TF-CBT for children who did not benefit from Step One and require more intensive treatment. This study compared SC-TF-CBT to standard TF-CBT in a community-based non-inferiority trial.

Method: A total of 183 children (aged 4-12 years) experiencing posttraumatic stress symptoms (PTSS) and their caregivers were randomly assigned to SC-TF-CBT or standard TF-CBT within 6 community …

Implementation Evaluation Of A Leadership Development Intervention For Improved Family Experience In A Private Paediatric Care Hospital, Pakistan, Muneera A. Rasheed, Ayesha Hussain, Amin Hashwani, Johannes T. Kedzierski, Babar S. Hasan

Department of Paediatrics and Child Health

Background: A study from a tertiary care center in Pakistan demonstrated that a leadership development intervention led to improved family experience of care outcomes. The objective of the current paper is to assess the implementation of this intervention and identify barriers and facilitators to inform sustainability and scalability.
Methods: A working group designed the intervention using a theory-of-change model to strengthen leadership development to achieve greater employee engagement. The interventions included: i) purpose and vision through purpose-driven leadership skills trainings; ii) engaging managers via on-the-job mentorship programme for managers, iii) employee voice i.e., facilitation of upward communication to hear the …

Measuring Contraceptive Method Mix, Prevalence, And Demand Satisfied By Age And Marital Status In 204 Countries And Territories, 1970-2019: A Systematic Analysis For The Global Burden Of Disease Study 2019, Annie Haakenstad, Olivia Angelino, Caleb M S Irvine, Zulfiqar Ahmed Bhutta, Kelly Bienhoff, Corinne Bintz, Kate Causey, M Ashworth Dirac, Nancy Fullman, Emmanuela Gakidou

Department of Paediatrics and Child Health

Background: Meeting the contraceptive needs of women of reproductive age is beneficial for the health of women and children, and the economic and social empowerment of women. Higher rates of contraceptive coverage have been linked to the availability of a more diverse range of contraceptive methods. We present estimates of the contraceptive prevalence rate (CPR), modern contraceptive prevalence rate (mCPR), demand satisfied, and the method of contraception used for both partnered and unpartnered women for 5-year age groups in 204 countries and territories between 1970 and 2019.
Methods: We used 1162 population-based surveys capturing contraceptive use among women between 1970 …

An Updated Assessment Of 43,110 Patients Enrolled In The Childhood Cancer Research Network: A Children’S Oncology Group Report, Austin L Brown, Pagna Sok, Michael E Scheurer, Karen R Rabin, Erin L Marcotte, Douglas S Hawkins, Logan G Spector, Philip J Lupo

Center for Medical Ethics and Health Policy Staff Publications

Background: The Childhood Cancer Research Network (CCRN) was established by the Children's Oncology Group (COG) as a resource for epidemiologic studies of childhood cancer. The objective of this study was to evaluate the representativeness of CCRN and identify factors associated with enrollment.

Method: The number of US childhood patients with cancer diagnosed < 20 years of age enrolled in CCRN (2008-2015) was compared to expected counts, calculated from Surveillance, Epidemiology, and End Results incidence rates and US Census population estimates. Observed-to-expected ratios and corresponding 95% confidence intervals (CI) were estimated across sex, race, diagnosis age, calendar year, and cancer diagnosis groups. Multivariable linear regression models were generated to evaluate the association between open COG phase 3 therapeutic trials and CCRN enrollment rates.

Result: The 43,110 cases enrolled in CCRN represented 36% of the expected childhood cancers diagnosed from 2008 to 2015 (N = 120,118). CCRN enrollment ratios [95% CI] were highest among males (0.38 [95% CI, 0.37-0.38]), non-Hispanics (0.35 [95% CI, 0.35-0.36]), and those diagnosed from 1 to 4 years …

Comparison Of Unmet Health Care Needs In Children With Intellectual Disability, Autism Spectrum Disorder And Both Disorders Combined, K. Haller, Adrienne Stolfi, John Duby

Medical Education Faculty Publications

Background: The purpose of this study was to assess the unmet health care needs of children with intellectual disability (ID) compared with children with autism spectrum disorder (ASD) and whether access to health insurance coverage is a contributing factor. Children with ID may be masked in the health care system due to increased diagnosis and awareness of ASD. The needs, unmet needs and insurance coverage of children with ID alone, ASD alone, and co-occurring ID and ASD were assessed in this study.

Methods: The 2016 to 2019 United States' Census Bureau National Survey of Children's Health was used to determine …

United States Healthcare Burden Of Pediatric Functional Gastrointestinal Pain Disorder Hospitalizations From 2002 To 2018, John M Hollier, Jason L Salemi, Robert J Shulman

Faculty, Staff and Students Publications

BACKGROUND: The healthcare burden of pediatric functional gastrointestinal pain disorders (FGIDs) is unclear. Our study aimed to characterize the burden of these hospitalizations in the United States (US).

METHODS: We utilized the US National Inpatient Sample from 2002 to 2018 to capture pediatric hospitalizations (ages 4 to 18 years old) with a primary discharge diagnosis of abdominal pain, constipation, irritable bowel syndrome, dyspepsia, abdominal migraine, cyclic vomiting syndrome, or fecal incontinence. We calculated the FGID hospitalization prevalence rate, length of stay (LOS), and inflation-adjusted costs annually and assessed for statistically significant trend changes using joinpoint analyses.

KEY RESULTS: 22.3 million …

Social And Demographic Disparities In The Severity Of Multisystem Inflammatory Syndrome In Children, Fabio Savorgnan, Sebastian Acosta, Alexander Alali, Axel Moreira, Ananth Annapragada, Craig G Rusin, Saul Flores, Rohit S Loomba, Alvaro Moreira

Faculty, Staff and Students Publications

Social constructs are known risk factors for multisystem inflammatory syndrome in children. A review of 206 patients demonstrated that children who were non-Hispanic Black, over the age of 12 years or living in a disadvantaged neighborhood associated with severe multisystem inflammatory syndrome in children (intensive care unit admission, intubation and/or vasopressor use).

Nexmif Pathogenic Variants In Individuals Of Korean, Vietnamese, And Mexican Descent, Elizabeth Langley, Laura S Farach, Mary K Koenig, Hope Northrup, David F Rodriguez-Buritica, Kate Mowrey

Faculty, Staff and Student Publications

NEXMIF pathogenic variants have been known to produce a wide spectrum of X-linked intellectual disability (ID) in both males and females. Thus far, few individuals from diverse populations have been described with NEXMIF-related disorders. Herein, we report three individuals with NEXMIF pathogenic variants, the first two are the only males of Korean and Vietnamese descent described with this disorder to our knowledge. The last patient is a Hispanic female who harbors the same pathogenic variant as a previously described Caucasian individual, but with differing clinical presentation. These patients present with many classic symptoms of NEXMIF-related disorders including ID, epilepsy, developmental …