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1. 'They Can Stigmatize You': A Qualitative Assessment of the Influence of School Factors on Engagement in Care and Medication Adherence among Adolescents with HIV in Western Kenya

Author

Wiggins, Lisa, O'Malley, Gabrielle, Wagner, Anjuli D., Mutisya, Immaculate, Wilson, Kate S., Lawrence, Sarah, Moraa, Hellen, Kinuthia, John, Itindi, Janet, Muhenje, Odylia, Chen, Tai-Ho, Singa, Benson, Mcgrath, Christine J., Ngugi, Evelyn, Katana, Abraham, Ng'ang'a, Lucy, John-Stewart, Grace, Kholer, Pamela, and Beima-Sofie, Kristin

Abstract

School-related factors may influence retention in care and adherence to antiretroviral therapy (ART) among adolescents with human immunodeficiency virus (HIV). We analyzed data from in-depth interviews with 40 adolescents with HIV (aged 14-19 years), 40 caregivers of adolescents with HIV, and 4 focus group discussions with healthcare workers to evaluate contextual factors affecting adherence to ART and clinic attendance among adolescents, with a focus on the school environment. Informed by Anderson's Model of Health Services Utilization, transcripts were systematically coded and synthesized to identify school-related themes. All groups identified the school environment as a critical barrier to engagement in HIV care and medication adherence for adolescents with HIV. Adolescent participants reported inflexible school schedules and disclosure to school staff as the biggest challenges adhering to clinic appointments and ART. Adolescents described experiencing stigma and discrimination by peers and school staff and would adjust when, where and how often they took ART to avoid inadvertent disclosure. Boarding school students faced challenges because they had limited private space or time. Caregivers were often instrumental in navigating school permissions, including identifying a treatment supporter among school staff. Additional research engaging school staff may guide interventions for schools to reduce stigma and improve adherence and retention.

Published
2022
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6. The Human Phenotype Ontology in 2024: phenotypes around the world

Author

Gargano, Michael A, primary, Matentzoglu, Nicolas, additional, Coleman, Ben, additional, Addo-Lartey, Eunice B, additional, Anagnostopoulos, Anna V, additional, Anderton, Joel, additional, Avillach, Paul, additional, Bagley, Anita M, additional, Bakštein, Eduard, additional, Balhoff, James P, additional, Baynam, Gareth, additional, Bello, Susan M, additional, Berk, Michael, additional, Bertram, Holli, additional, Bishop, Somer, additional, Blau, Hannah, additional, Bodenstein, David F, additional, Botas, Pablo, additional, Boztug, Kaan, additional, Čady, Jolana, additional, Callahan, Tiffany J, additional, Cameron, Rhiannon, additional, Carbon, Seth J, additional, Castellanos, Francisco, additional, Caufield, J Harry, additional, Chan, Lauren E, additional, Chute, Christopher G, additional, Cruz-Rojo, Jaime, additional, Dahan-Oliel, Noémi, additional, Davids, Jon R, additional, de Dieuleveult, Maud, additional, de Souza, Vinicius, additional, de Vries, Bert B A, additional, de Vries, Esther, additional, DePaulo, J Raymond, additional, Derfalvi, Beata, additional, Dhombres, Ferdinand, additional, Diaz-Byrd, Claudia, additional, Dingemans, Alexander J M, additional, Donadille, Bruno, additional, Duyzend, Michael, additional, Elfeky, Reem, additional, Essaid, Shahim, additional, Fabrizzi, Carolina, additional, Fico, Giovanna, additional, Firth, Helen V, additional, Freudenberg-Hua, Yun, additional, Fullerton, Janice M, additional, Gabriel, Davera L, additional, Gilmour, Kimberly, additional, Giordano, Jessica, additional, Goes, Fernando S, additional, Moses, Rachel Gore, additional, Green, Ian, additional, Griese, Matthias, additional, Groza, Tudor, additional, Gu, Weihong, additional, Guthrie, Julia, additional, Gyori, Benjamin, additional, Hamosh, Ada, additional, Hanauer, Marc, additional, Hanušová, Kateřina, additional, He, Yongqun (Oliver), additional, Hegde, Harshad, additional, Helbig, Ingo, additional, Holasová, Kateřina, additional, Hoyt, Charles Tapley, additional, Huang, Shangzhi, additional, Hurwitz, Eric, additional, Jacobsen, Julius O B, additional, Jiang, Xiaofeng, additional, Joseph, Lisa, additional, Keramatian, Kamyar, additional, King, Bryan, additional, Knoflach, Katrin, additional, Koolen, David A, additional, Kraus, Megan L, additional, Kroll, Carlo, additional, Kusters, Maaike, additional, Ladewig, Markus S, additional, Lagorce, David, additional, Lai, Meng-Chuan, additional, Lapunzina, Pablo, additional, Laraway, Bryan, additional, Lewis-Smith, David, additional, Li, Xiarong, additional, Lucano, Caterina, additional, Majd, Marzieh, additional, Marazita, Mary L, additional, Martinez-Glez, Victor, additional, McHenry, Toby H, additional, McInnis, Melvin G, additional, McMurry, Julie A, additional, Mihulová, Michaela, additional, Millett, Caitlin E, additional, Mitchell, Philip B, additional, Moslerová, Veronika, additional, Narutomi, Kenji, additional, Nematollahi, Shahrzad, additional, Nevado, Julian, additional, Nierenberg, Andrew A, additional, Čajbiková, Nikola Novák, additional, Nurnberger, John I, additional, Ogishima, Soichi, additional, Olson, Daniel, additional, Ortiz, Abigail, additional, Pachajoa, Harry, additional, Perez de Nanclares, Guiomar, additional, Peters, Amy, additional, Putman, Tim, additional, Rapp, Christina K, additional, Rath, Ana, additional, Reese, Justin, additional, Rekerle, Lauren, additional, Roberts, Angharad M, additional, Roy, Suzy, additional, Sanders, Stephan J, additional, Schuetz, Catharina, additional, Schulte, Eva C, additional, Schulze, Thomas G, additional, Schwarz, Martin, additional, Scott, Katie, additional, Seelow, Dominik, additional, Seitz, Berthold, additional, Shen, Yiping, additional, Similuk, Morgan N, additional, Simon, Eric S, additional, Singh, Balwinder, additional, Smedley, Damian, additional, Smith, Cynthia L, additional, Smolinsky, Jake T, additional, Sperry, Sarah, additional, Stafford, Elizabeth, additional, Stefancsik, Ray, additional, Steinhaus, Robin, additional, Strawbridge, Rebecca, additional, Sundaramurthi, Jagadish Chandrabose, additional, Talapova, Polina, additional, Tenorio Castano, Jair A, additional, Tesner, Pavel, additional, Thomas, Rhys H, additional, Thurm, Audrey, additional, Turnovec, Marek, additional, van Gijn, Marielle E, additional, Vasilevsky, Nicole A, additional, Vlčková, Markéta, additional, Walden, Anita, additional, Wang, Kai, additional, Wapner, Ron, additional, Ware, James S, additional, Wiafe, Addo A, additional, Wiafe, Samuel A, additional, Wiggins, Lisa D, additional, Williams, Andrew E, additional, Wu, Chen, additional, Wyrwoll, Margot J, additional, Xiong, Hui, additional, Yalin, Nefize, additional, Yamamoto, Yasunori, additional, Yatham, Lakshmi N, additional, Yocum, Anastasia K, additional, Young, Allan H, additional, Yüksel, Zafer, additional, Zandi, Peter P, additional, Zankl, Andreas, additional, Zarante, Ignacio, additional, Zvolský, Miroslav, additional, Toro, Sabrina, additional, Carmody, Leigh C, additional, Harris, Nomi L, additional, Munoz-Torres, Monica C, additional, Danis, Daniel, additional, Mungall, Christopher J, additional, Köhler, Sebastian, additional, Haendel, Melissa A, additional, and Robinson, Peter N, additional

Published
2023
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7. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2016

Author

Maenner, Matthew J., Shaw, Kelly A., Baio, Jon, Washington, Anita, Patrick, Mary, DiRienzo, Monica, Christensen, Deborah L., Wiggins, Lisa D., Pettygrove, Sydney, Andrews, Jennifer G., Lopez, Maya, Hudson, Allison, Baroud, Thaer, Schwenk, Yvette, White, Tiffany, Rosenberg, Cordelia Robinson, Lee, Li-Ching, Harrington, Rebecca A, Huston, Margaret, Hewitt, Amy, Esler, Amy, Hall-Lande, Jennifer, Poynter, Jenny N., Hallas-Muchow, Libby, Constantino, John N., Fitzgerald, Robert T., Zahorodny, Walter, Shenouda, Josephine, Daniels, Julie L., Warren, Zachary, Vehorn, Alison, Salinas, Angelica, Durkin, Maureen S., and Dietz, Patricia M.

Published
2020

8. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Early Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2016

Author

Shaw, Kelly A., Maenner, Matthew J., Baio, Jon, Washington, Anita, Christensen, Deborah L., Wiggins, Lisa D., Pettygrove, Sydney, Andrews, Jennifer G., White, Tiffany, Rosenberg, Cordelia Robinson, Constantino, John N., Fitzgerald, Robert T., Zahorodny, Walter, Shenouda, Josephine, Daniels, Julie L., Salinas, Angelica, Durkin, Maureen S., and Dietz, Patricia M.

Published
2020

9. Notes from the Field: Autism Spectrum Disorder Among Children with Laboratory Evidence of Prenatal Zika Virus Exposure — Puerto Rico, 2023

Author

Roth, Nicole M., primary, Delgado-López, Camille, additional, Wiggins, Lisa D., additional, Muñoz, Nancy Nieves, additional, Mulkey, Sarah B., additional, Nieves-Ferrer, Leishla, additional, Woodworth, Kate R., additional, Rosario, Glorimar Meléndez, additional, Huertas, Mariam Marcano, additional, Moore, Cynthia A., additional, Tong, Van T., additional, Gilboa, Suzanne M., additional, and Valencia-Prado, Miguel, additional

Published
2023
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10. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014

Author

Baio, Jon, Wiggins, Lisa, Christensen, Deborah L., Maenner, Matthew J, Daniels, Julie, Warren, Zachary, Kurzius-Spencer, Margaret, Zahorodny, Walter, Rosenberg, Cordelia Robinson, White, Tiffany, Durkin, Maureen S., Imm, Pamela, Nikolaou, Loizos, Yeargin-Allsopp, Marshalyn, Lee, Li-Ching, Harrington, Rebecca, Lopez, Maya, Fitzgerald, Robert T., Hewitt, Amy, Pettygrove, Sydney, Constantino, John N., Vehorn, Alison, Shenouda, Josephine, Hall-Lande, Jennifer, Van Naarden Braun, Kim, and Dowling, Nicole F.

Published
2018

12. Toileting Resistance Among Preschool-Age Children with and Without Autism Spectrum Disorder

Author

Wiggins, Lisa D., Nadler, Cy, Hepburn, Susan, Rosenberg, Steven, Reynolds, Ann, and Zubler, Jennifer

Subjects
Parents, Problem Behavior, Psychiatry and Mental health, Autism Spectrum Disorder, Case-Control Studies, Child, Preschool, Developmental Disabilities, Pediatrics, Perinatology and Child Health, Developmental and Educational Psychology, Humans, Health Promotion, Child, Article
Abstract

OBJECTIVE: Children with autism spectrum disorder (ASD) may achieve continence later than other children. Little is known about factors associated with toileting resistance in children with ASD and other developmental delays/disabilities (DD). We sought to describe toileting resistance in children with ASD, DD, and from the general population (POP) and identify factors associated with toileting resistance in children with ASD and DD. METHOD: Families and children aged 24–68 months were enrolled in the Study to Explore Early Development, a multi-site case-control study on ASD. Children with ASD (N=743) and DD (N=766), and those from the POP (N=693) who were >=48 months were included in this study. Parents reported toileting resistance, gastrointestinal issues, behavior problems, and ASD symptoms in their child. Children completed an in-person evaluation to determine ASD status and developmental level. RESULTS: Toileting resistance was more common among children with ASD (49.1%) than children with DD (23.6%) and POP (8.0%). Diarrhea and deficits in social awareness were significantly associated with toileting resistance in children with ASD and DD. Constipation, expressive language delays, and low social motivation were significantly associated with toileting resistance only in children with ASD; very low visual reception skills and oppositional behaviors were significantly associated with toileting resistance in only children with DD (all p

Published
2022

13. sj-docx-1-phr-10.1177_00333549231163551 – Supplemental material for The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016

Author

Hughes, Michelle M., Shaw, Kelly A., DiRienzo, Monica, Durkin, Maureen S., Esler, Amy, Hall-Lande, Jennifer, Wiggins, Lisa, Zahorodny, Walter, Singer, Alison, and Maenner, Matthew J.

Subjects
111799 Public Health and Health Services not elsewhere classified, FOS: Health sciences
Abstract

Supplemental material, sj-docx-1-phr-10.1177_00333549231163551 for The Prevalence and Characteristics of Children With Profound Autism, 15 Sites, United States, 2000-2016 by Michelle M. Hughes, Kelly A. Shaw, Monica DiRienzo, Maureen S. Durkin, Amy Esler, Jennifer Hall-Lande, Lisa Wiggins, Walter Zahorodny, Alison Singer and Matthew J. Maenner in Public Health Reports

Published
2023
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14. ‘They can stigmatize you’: a qualitative assessment of the influence of school factors on engagement in care and medication adherence among adolescents with HIV in Western Kenya

Author

Wiggins, Lisa, primary, O’Malley, Gabrielle, additional, Wagner, Anjuli D, additional, Mutisya, Immaculate, additional, Wilson, Kate S, additional, Lawrence, Sarah, additional, Moraa, Hellen, additional, Kinuthia, John, additional, Itindi, Janet, additional, Muhenje, Odylia, additional, Chen, Tai-Ho, additional, Singa, Benson, additional, Mcgrath, Christine J, additional, Ngugi, Evelyn, additional, Katana, Abraham, additional, Ng′ang′a, Lucy, additional, John-Stewart, Grace, additional, Kholer, Pamela, additional, and Beima-Sofie, Kristin, additional

Published
2022
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15. CDC’s 'Learn the Signs. Act Early.' Developmental Milestone Resources to Improve Early Identification of Children with Developmental Delays, Disorders, and Disabilities

Author

Abercrombie, Julia, Wiggins, Lisa, and Green, Katie K.

Subjects
Article
Abstract

Approximately 1 in 6 children in the US has a developmental delay, disorder, or disability (DD). Early identification of DDs can help families access services that empower children and families, and it can improve child outcomes. The “Learn the Signs. Act Early.” (LTSAE) Program at the Centers for Disease Control and Prevention (CDC) encourages parents and providers to monitor every child’s early development and act when there is a concern. In February 2022, LTSAE released revised materials that include updated developmental milestone checklists to better support ongoing conversations between families and professionals. This article describes the purpose of the checklists and how early childhood professionals can use these free resources to engage families in developmental monitoring.

Published
2022

16. Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood--Four U.S. Sites, 2018-2020

Author

Powell, Patrick S., Pazol, Karen, Wiggins, Lisa D., Daniels, Julie L., Dichter, Gabriel S., Bradley, Chyrise B., Pretzel, Rebecca, Kloetzer, Joy, McKenzie, Charmaine, Scott, Alexys, Robinson, Britney, Sims, Amy S., Kasten, Eric P., Fallin, M. Daniele, Levy, Susan E., Dietz, Patricia M., and Cogswell, Mary E.

Subjects
Medical care -- Utilization, Health care industry -- Surveys -- Research -- Usage, Teenagers -- Surveys, Youth -- Surveys, Children -- Health aspects, Adolescence -- Usage -- Research -- Surveys, Autism -- Research, Health care industry, Health
Abstract

Persons identified in early childhood as having autism spectrum disorder (autism) often have co-occurring health problems that extend into adolescence (1-3). Although only limited data exist on their health and [...]

Published
2021

19. Autism Spectrum Disorder Among Children with Laboratory Evidence of Prenatal Zika Virus Exposure — Puerto Rico, 2023.

Author

Roth, Nicole M., Delgado-López, Camille, Wiggins, Lisa D., Nieves Muñoz, Nancy, Mulkey, Sarah B., Nieves-Ferrer, Leishla, Woodworth, Kate R., Meléndez Rosario, Glorimar, Marcano Huertas, Mariam, Moore, Cynthia A., Tong, Van T., Gilboa, Suzanne M., and Valencia-Prado, Miguel

Subjects
AUTISM spectrum disorders, ZIKA virus infections, PREGNANCY complications, ZIKA virus
Abstract

The article presents a report which estimated the prevalence of autism spectrum disorder (ASD) diagnoses among children with possible prenatal Zika virus exposure and described prenatal characteristics and other outcomes by ASD diagnosis status. Topics include possible effects of infection during pregnancy with Zika virus, prevalence of ASD diagnosis among children with Zika virus exposure reported from Puerto Rico, and prenatal characteristics and child outcomes among live-born infants.

Published
2023
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20. Racial/ethnic disparities in the identification of children with autism spectrum disorders

Author

Mandell, David S., Wiggins, Lisa D., Carpenter, Laura Arnstein, Daniels, Julie, DiGuiseppi, Carolyn, Durkin, Maureen S., Giarelli, Ellen, Morrier, Michael J., Nicholas, Joyce S., Pinto-Martin, Jennifer A., Shattuck, Paul T., Thomas, Kathleen C., Yeargin-Allsopp, Marshalyn, and Kirby, Russell S.

Subjects
Autism -- Demographic aspects, Autism -- Research, Autism -- Genetic aspects, Government, Health care industry
Abstract

Objectives. We sought to examine racial and ethnic disparities in the recognition of autism spectrum disorders (ASDs). Methods. Within a multisite network, 2568 children aged 8 years were identified as meeting surveillance criteria for ASD through abstraction of evaluation records from multiple sources. Through logistic regression with random effects for site, we estimated the association between race/ethnicity and documented ASD, adjusting for gender, IQ, birthweight, and maternal education. Results. Fifty-eight percent of children had a documented autism spectrum disorder. In adjusted analyses, children who were Black (odds ratio [OR]=0.79; 95% confidence interval [CI]=0.64, 0.96), Hispanic (OR=0.76; CI=0.56, 0.99), or of other race/ethnicity (OR=0.65; CI=0.43, 0.97) were less likely than were White children to have a documented ASD. This disparity persisted for Black children, regardless of IQ, and was concentrated for children of other ethnicities when IQ was lower than 70. Conclusions. Significant racial/ethnic dispatrities exist in the recognition of ASD. For some children in some racial/ethnic groups, the presence of intellectual disability may affect professionals' further assessment of developmental delay. Our findings suggest the need for continued professional education related to the heterogeneity of the presentation of ASD. (doi: 10.2105/AJPH.2007.131243)

Published
2009

21. Ensuring Equitable COVID-19 Vaccination for People With Disabilities and Their Caregivers.

Author

Wiggins, Lisa D., Jett, Harriet, and Meunier, Jennifer

Subjects
*EDUCATION of people with disabilities, *HEALTH education, *COVID-19, *CAREGIVERS, *HEALTH services accessibility, *IMMUNIZATION, *COVID-19 vaccines, *HOME care services, *TRANSPORTATION of patients, *PUBLIC health, *POLICY sciences, *HEALTH equity, *PATIENT education, *MEDICAL appointments
Abstract

In the article, the authors discuss the challenges and issues in the efforts to ensure equitable vaccination against COVID-19 among people with disabilities and their caregivers in the U.S. Topics include a study by the U.S. Centers for Disease Control and Prevention (CDC) COVID-19 Response Team on COVID-19 vaccination and the relationship between disability status and severe illness due to COVID-19.

Published
2022
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25. Encyclopedia of California's Catholic Heritage: 1769-1999. (Reviews)

Author

Wiggins, Lisa R.

Subjects
Encyclopedia of California's Catholic Heritage: 1769-1999 (Book), Books -- Book reviews, History, Regional focus/area studies
Abstract

By Msgr. Francis J. Weber. (Mission Hills, Calif. & Spokane, Wash.: Saint Francis Historical Society and The Arthur H. Clark Co., 2001, 1148 pp., $90.00.) In this work of magnificent [...]

Published
2001

26. Remote Delivery of Allied and Behavioral Healthcare During COVID-19 for Children With Developmental Disabilities

Author

Wiggins, Lisa D., Tian, Lin H., Tinker, Sarah C., Yeargin-Allsopp, M., DiGuiseppi, Carolyn G., Nadler, Cy, Powell, Patrick S., Moody, Eric J., Durkin, Maureen S., Fallin, M. Danielle, Ryerson, A. Blythe, Thierry, JoAnn M., Robinson, Britney, and Pazol, Karen

Abstract

Many children with autism spectrum disorder (ASD) and other developmental disabilities (DD) transitioned to telehealth services due to the COVID-19 pandemic. Our objectives were to describe reductions in allied and behavioral healthcare services and receipt of caregiver training to deliver services at home due to COVID-19 for children with ASD and other DD, and factors associated with worse response to remote delivery of services for children with ASD.

Published
2023
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27. The Human Phenotype Ontology in 2024: phenotypes around the world.

Author

Gargano MA, Matentzoglu N, Coleman B, Addo-Lartey EB, Anagnostopoulos AV, Anderton J, Avillach P, Bagley AM, Bakštein E, Balhoff JP, Baynam G, Bello SM, Berk M, Bertram H, Bishop S, Blau H, Bodenstein DF, Botas P, Boztug K, Čady J, Callahan TJ, Cameron R, Carbon SJ, Castellanos F, Caufield JH, Chan LE, Chute CG, Cruz-Rojo J, Dahan-Oliel N, Davids JR, de Dieuleveult M, de Souza V, de Vries BBA, de Vries E, DePaulo JR, Derfalvi B, Dhombres F, Diaz-Byrd C, Dingemans AJM, Donadille B, Duyzend M, Elfeky R, Essaid S, Fabrizzi C, Fico G, Firth HV, Freudenberg-Hua Y, Fullerton JM, Gabriel DL, Gilmour K, Giordano J, Goes FS, Moses RG, Green I, Griese M, Groza T, Gu W, Guthrie J, Gyori B, Hamosh A, Hanauer M, Hanušová K, He YO, Hegde H, Helbig I, Holasová K, Hoyt CT, Huang S, Hurwitz E, Jacobsen JOB, Jiang X, Joseph L, Keramatian K, King B, Knoflach K, Koolen DA, Kraus ML, Kroll C, Kusters M, Ladewig MS, Lagorce D, Lai MC, Lapunzina P, Laraway B, Lewis-Smith D, Li X, Lucano C, Majd M, Marazita ML, Martinez-Glez V, McHenry TH, McInnis MG, McMurry JA, Mihulová M, Millett CE, Mitchell PB, Moslerová V, Narutomi K, Nematollahi S, Nevado J, Nierenberg AA, Čajbiková NN, Nurnberger JI Jr, Ogishima S, Olson D, Ortiz A, Pachajoa H, Perez de Nanclares G, Peters A, Putman T, Rapp CK, Rath A, Reese J, Rekerle L, Roberts AM, Roy S, Sanders SJ, Schuetz C, Schulte EC, Schulze TG, Schwarz M, Scott K, Seelow D, Seitz B, Shen Y, Similuk MN, Simon ES, Singh B, Smedley D, Smith CL, Smolinsky JT, Sperry S, Stafford E, Stefancsik R, Steinhaus R, Strawbridge R, Sundaramurthi JC, Talapova P, Tenorio Castano JA, Tesner P, Thomas RH, Thurm A, Turnovec M, van Gijn ME, Vasilevsky NA, Vlčková M, Walden A, Wang K, Wapner R, Ware JS, Wiafe AA, Wiafe SA, Wiggins LD, Williams AE, Wu C, Wyrwoll MJ, Xiong H, Yalin N, Yamamoto Y, Yatham LN, Yocum AK, Young AH, Yüksel Z, Zandi PP, Zankl A, Zarante I, Zvolský M, Toro S, Carmody LC, Harris NL, Munoz-Torres MC, Danis D, Mungall CJ, Köhler S, Haendel MA, and Robinson PN

Subjects
Humans, Phenotype, Genomics, Algorithms, Rare Diseases, Biological Ontologies
Abstract

The Human Phenotype Ontology (HPO) is a widely used resource that comprehensively organizes and defines the phenotypic features of human disease, enabling computational inference and supporting genomic and phenotypic analyses through semantic similarity and machine learning algorithms. The HPO has widespread applications in clinical diagnostics and translational research, including genomic diagnostics, gene-disease discovery, and cohort analytics. In recent years, groups around the world have developed translations of the HPO from English to other languages, and the HPO browser has been internationalized, allowing users to view HPO term labels and in many cases synonyms and definitions in ten languages in addition to English. Since our last report, a total of 2239 new HPO terms and 49235 new HPO annotations were developed, many in collaboration with external groups in the fields of psychiatry, arthrogryposis, immunology and cardiology. The Medical Action Ontology (MAxO) is a new effort to model treatments and other measures taken for clinical management. Finally, the HPO consortium is contributing to efforts to integrate the HPO and the GA4GH Phenopacket Schema into electronic health records (EHRs) with the goal of more standardized and computable integration of rare disease data in EHRs., (© The Author(s) 2023. Published by Oxford University Press on behalf of Nucleic Acids Research.)

Published
2024
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28. Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood - Four U.S. Sites, 2018-2020.

Author

Powell PS, Pazol K, Wiggins LD, Daniels JL, Dichter GS, Bradley CB, Pretzel R, Kloetzer J, McKenzie C, Scott A, Robinson B, Sims AS, Kasten EP, Fallin MD, Levy SE, Dietz PM, and Cogswell ME

Subjects
Adolescent, Female, Humans, Male, United States epidemiology, Autistic Disorder epidemiology, Health Status, Patient Acceptance of Health Care statistics & numerical data
Abstract

Persons identified in early childhood as having autism spectrum disorder (autism) often have co-occurring health problems that extend into adolescence (1-3). Although only limited data exist on their health and use of health care services as they transition to adolescence, emerging data suggest that a minority of these persons receive recommended guidance* from their primary care providers (PCPs) starting at age 12 years to ensure a planned transition from pediatric to adult health care (4,5). To address this gap in data, researchers analyzed preliminary data from a follow-up survey of parents and guardians of adolescents aged 12-16 years who previously participated in the Study to Explore Early Development (https://www.cdc.gov/ncbddd/autism/seed.html). The adolescents were originally studied at ages 2-5 years and identified at that age as having autism (autism group) or as general population controls (control group). Adjusted prevalence ratios (aPRs) that accounted for differences in demographic characteristics were used to compare outcomes between groups. Adolescents in the autism group were more likely than were those in the control group to have physical difficulties (21.2% versus 1.6%; aPR = 11.6; 95% confidence interval [CI] = 4.2-31.9), and to have additional mental health or other conditions † (one or more condition: 63.0% versus 28.9%; aPR = 1.9; 95% CI = 1.5-2.5). Adolescents in the autism group were more likely to receive mental health services (41.8% versus 22.1%; aPR = 1.8, 95% CI = 1.3-2.6) but were also more likely to have an unmet medical or mental health service need § (11.0% versus 3.2%; aPR = 3.1; 95% CI = 1.1-8.8). In both groups, a small percentage of adolescents (autism, 7.5%; control, 14.1%) received recommended health care transition (transition) guidance. These findings are consistent with previous research (4,5) indicating that few adolescents receive the recommended transition guidance and suggest that adolescents identified with autism in early childhood are more likely than adolescents in the general population to have unmet health care service needs. Improved provider training on the heath care needs of adolescents with autism and coordination of comprehensive programs to meet their needs can improve delivery of services and adherence to recommended guidance for transitioning from pediatric to adult health care., Competing Interests: All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. No potential conflicts of interest were disclosed.

Published
2021
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