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1.
JMIR Hum Factors ; 11: e57114, 2024 Jul 19.
Artículo en Inglés | MEDLINE | ID: mdl-39028995

RESUMEN

BACKGROUND: Health outcomes are significantly influenced by unmet social needs. Although screening for social needs has become common in health care settings, there is often poor linkage to resources after needs are identified. The structural barriers (eg, staffing, time, and space) to helping address social needs could be overcome by a technology-based solution. OBJECTIVE: This study aims to present the design and evaluation of a chatbot, DAPHNE (Dialog-Based Assistant Platform for Healthcare and Needs Ecosystem), which screens for social needs and links patients and families to resources. METHODS: This research used a three-stage study approach: (1) an end-user survey to understand unmet needs and perception toward chatbots, (2) iterative design with interdisciplinary stakeholder groups, and (3) a feasibility and usability assessment. In study 1, a web-based survey was conducted with low-income US resident households (n=201). Following that, in study 2, web-based sessions were held with an interdisciplinary group of stakeholders (n=10) using thematic and content analysis to inform the chatbot's design and development. Finally, in study 3, the assessment on feasibility and usability was completed via a mix of a web-based survey and focus group interviews following scenario-based usability testing with community health workers (family advocates; n=4) and social workers (n=9). We reported descriptive statistics and chi-square test results for the household survey. Content analysis and thematic analysis were used to analyze qualitative data. Usability score was descriptively reported. RESULTS: Among the survey participants, employed and younger individuals reported a higher likelihood of using a chatbot to address social needs, in contrast to the oldest age group. Regarding designing the chatbot, the stakeholders emphasized the importance of provider-technology collaboration, inclusive conversational design, and user education. The participants found that the chatbot's capabilities met expectations and that the chatbot was easy to use (System Usability Scale score=72/100). However, there were common concerns about the accuracy of suggested resources, electronic health record integration, and trust with a chatbot. CONCLUSIONS: Chatbots can provide personalized feedback for families to identify and meet social needs. Our study highlights the importance of user-centered iterative design and development of chatbots for social needs. Future research should examine the efficacy, cost-effectiveness, and scalability of chatbot interventions to address social needs.


Asunto(s)
Poblaciones Vulnerables , Humanos , Encuestas y Cuestionarios , Femenino , Evaluación de Necesidades , Adulto , Masculino , Grupos Focales , Persona de Mediana Edad
2.
Pediatrics ; 153(5)2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38591136

RESUMEN

BACKGROUND AND OBJECTIVES: Race-based medicine, which falsely assumes that race is biological, is common in the published medical literature. We analyzed trends in the use of race in Pediatrics articles over a 75-year period. METHODS: We analyzed a random sample of 50 original research articles published each decade in Pediatrics from 1948 to 2022. RESULTS: Of 375 articles, 39% (n = 147) included race. Among articles, 85% (n = 116) used race only to describe study subjects, 7% (n = 9) described race as a social construct, and 11% (n = 15) described race as a biological construct. Only 7% (n = 10) of studies provided a reason for including race. Statements reflective of racial bias or discrimination were identified in 22% (n = 30) of the articles that mentioned race. Although statements concerning for explicit racial bias were uncommon, with none identified in the most recent decade, statements suggestive of implicit racial bias still occurred (22%, 5 of 23). Race was presented as a dichotomy, such as "white/nonwhite," in 9% of studies (n = 12). Regarding currently nonrecommended terminology, the term "minorities" was used in 13% of studies (n = 18); 25% of studies used the term "others" (n = 34), and among these, 91% (n = 31 of 34) did not provide any definition, an occurrence that increased over time at a rate of 0.9%/year. CONCLUSIONS: Although there has been improvement over the past 75 years in the reporting of race in published studies in Pediatrics, significant opportunities for further improvement remain.


Asunto(s)
Pediatría , Grupos Raciales , Racismo , Humanos , Pediatría/tendencias , Publicaciones Periódicas como Asunto/tendencias
3.
Acad Pediatr ; 24(5): 719-727, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38458490

RESUMEN

A key component of primary care pediatrics is health promotion through screening: applying a test or procedure to detect a previously unrecognized disease or disease risk. How do we decide whether to screen? In 1965, Wilson and Jungner published an influential set of screening principles focused on the health problem's importance, the screening tool's performance, and the evidence for treatment efficacy. However, if we want realistic estimates of the population effects of routine screening, we must also account for the health care system's real-world functioning and disparities in care. We offer revised principles to guide discussions about routine screening in the primary care setting. We add to Wilson and Jungner's principles: 1. A focus on life course epidemiology and its consequences for population health, 2. A need to screen for the early stages of chronic health problems, 3. A concern for screening's acceptability to providers and the community, 4. A recommendation for estimating the uncertainty in benefits and harms in evaluating screening, 5. Inclusion of systematic plans for population data collection and monitoring, and 6. Recognition that achieving population health improvement requires a high-performing system with sufficient throughput and monitoring to deliver accessible, affordable, and effective care, especially for the groups experiencing the greatest inequities in access. Above all, instead of assuming best practices in treatment delivery and monitoring after screening, we argue for realism about the health care system functioning in routine practice.


Asunto(s)
Tamizaje Masivo , Salud Poblacional , Atención Primaria de Salud , Humanos , Niño , Pediatría , Promoción de la Salud/métodos , Enfermedad Crónica
5.
Pediatrics ; 152(6)2023 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-37969039

RESUMEN

OBJECTIVES: To evaluate changes in access to and utilization of behavioral health (BH) services after the integration of psychologists into primary care clinics compared with clinics without integrated psychologists. METHODS: We integrated 4 of 12 primary care clinics within our academic health system. We used the median wait time for BH services as a proxy for changes in access and defined BH utilization as the percentage of primary care visits that resulted in contact with a BH clinician within 180 days. We compared changes in access and utilization from the year before integration (September 2015 to September 2016) with the 2 years after integration (October 2016 to October 2018) within integrated clinics and between integrated and nonintegrated clinics. We used difference-in-difference analysis to test the association of study outcomes with the presence of integrated psychologists. RESULTS: Access and utilization were similar across all practices before integration. After integration, BH utilization increased by 143% in integrated clinics compared with 12% in nonintegrated clinics. The utilization of BH services outside of the medical home (ie, specialty BH service) decreased for integrated clinics only. In clinics with integrated psychologists, 93% of initial BH visits happened on the same day as a need was identified. The median wait time for the 7% in integrated clinics who were not seen on the same day was 11.4 days (interquartile range = 5.3-17.7) compared with 48.3 days (interquartile range = 20.4-93.6) for nonintegrated clinics. CONCLUSIONS: A team-based integration model increased BH utilization and access.


Asunto(s)
Prestación Integrada de Atención de Salud , Accesibilidad a los Servicios de Salud , Servicios de Salud Mental , Atención Primaria de Salud , Humanos , Atención Dirigida al Paciente , Psiquiatría
6.
Pediatrics ; 152(2)2023 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-37465909

RESUMEN

Guanidinoacetate methyltransferase (GAMT) deficiency is an autosomal recessive disorder of creatine biosynthesis due to pathogenic variants in the GAMT gene that lead to cerebral creatine deficiency and neurotoxic levels of guanidinoacetate. Untreated, GAMT deficiency is associated with hypotonia, significant intellectual disability, limited speech development, recurrent seizures, behavior problems, and involuntary movements. The birth prevalence of GAMT deficiency is likely between 0.5 and 2 per million live births. On the basis of small case series and sibling data, presymptomatic treatment with oral supplements of creatine, ornithine, and sodium benzoate, and a protein-restricted diet to reduce arginine intake, appear to substantially improve health and developmental outcomes. Without newborn screening, diagnosis typically happens after the development of significant impairment, when treatment has limited utility. GAMT deficiency newborn screening can be incorporated into the tandem-mass spectrometry screening that is already routinely used for newborn screening, with about 1 per 100 000 newborns screening positive. After a positive screen, diagnosis is established by finding an elevated guanidinoacetate concentration and low creatine concentration in the blood. Although GAMT deficiency is significantly more rare than other conditions included in newborn screening, the feasibility of screening, the low number of positive results, the relative ease of diagnosis, and the expected benefit of presymptomatic dietary therapy led to a recommendation from the Advisory Committee on Heritable Disorders in Newborns and Children to the Secretary of Health and Human Services that GAMT deficiency be added to the Recommended Uniform Screening Panel. This recommendation was accepted in January 2023.


Asunto(s)
Trastornos del Desarrollo del Lenguaje , Trastornos del Movimiento , Niño , Humanos , Recién Nacido , Guanidinoacetato N-Metiltransferasa/genética , Creatina , Tamizaje Neonatal/métodos , Trastornos del Desarrollo del Lenguaje/diagnóstico , Trastornos del Movimiento/diagnóstico , Trastornos del Movimiento/genética , Trastornos del Movimiento/terapia
8.
Pediatrics ; 152(1)2023 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-37282976

RESUMEN

BACKGROUND AND OBJECTIVES: Anxiety disorder diagnoses in office-based settings increased for children through the mid-2010s, but recent changes in diagnosis and treatment are not well understood. The objectives of the current study were to evaluate recent trends in anxiety disorder diagnosis and treatment among children, adolescents, and young adults. METHODS: This study used serial cross-sectional data from the National Ambulatory Medical Care Survey (2006-2018), a nationally representative annual survey of US office-based visits. Changes in anxiety disorder diagnosis and 4 treatment categories (therapy alone, therapy and medications, medications alone, or neither) are described across 3 periods (2006-2009, 2010-2013, 2014-2018). Multinomial logistic regression compared differences in treatment categories, adjusting for age group, sex, and race/ethnicity, contrasting the last and middle periods with the first. RESULTS: The overall proportion of office visits with an anxiety disorder diagnosis significantly increased from 1.4% (95% confidence interval [CI] 1.2-1.7; n = 9 246 921 visits) in 2006 to 2009 to 4.2% (95% CI 3.4-5.2; n = 23 120 958 visits) in 2014 to 2018. The proportion of visits with any therapy decreased from 48.8% (95% CI 40.1-57.6) to 32.6% (95% CI 24.5-41.8), but there was no significant change in the overall use of medications. The likelihood of receiving medication alone during office visits was significantly higher in the last, relative to the first period (relative risk ratio = 2.42, 95% CI 1.24-4.72). CONCLUSIONS: The proportion of outpatient visits that included a diagnosis of anxiety increased over time, accompanied by a decrease in the proportion of visits with therapy.


Asunto(s)
Atención Ambulatoria , Ansiedad , Humanos , Niño , Adolescente , Adulto Joven , Estados Unidos/epidemiología , Estudios Transversales , Ansiedad/epidemiología , Ansiedad/terapia , Encuestas de Atención de la Salud , Modelos Logísticos , Visita a Consultorio Médico , Pautas de la Práctica en Medicina
9.
Pediatrics ; 152(1)2023 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-37259195

RESUMEN

The inaugural issue of Pediatrics was published in 1948. Although the journal has remained steadfast in its mission of helping pediatricians and other child health care clinicians improve outcomes for children and families, the approach it uses to achieve its mission continues to evolve. This special article provides a broad historical overview of changes to the journal, focusing on the last 25 years, including the move to online publication and use of social media, the adoption of new article types, the commitment to transparency, the expansion of the editorial board, and the commitment to diversity, equity, inclusion, and justice. These changes ensure that Pediatrics remains timely and relevant for everyone invested in improving child health outcomes.


Asunto(s)
Salud Infantil , Pediatría , Niño , Humanos , Justicia Social
11.
Int J Neonatal Screen ; 9(2)2023 Apr 06.
Artículo en Inglés | MEDLINE | ID: mdl-37092514

RESUMEN

The Recommended Uniform Screening Panel (RUSP) is the list of conditions recommended by the US Secretary of Health and Human Services for inclusion in state newborn screening (NBS). During 2010-2022, seven conditions were added to the RUSP: severe combined immunodeficiency (SCID) (2010), critical congenital heart disease (CCHD) (2011), glycogen storage disease, type II (Pompe) (2015), mucopolysaccharidosis, type I (MPS I) (2016), X-linked adrenoleukodystrophy (X-ALD) (2016), spinal muscular atrophy (SMA) (2018), and mucopolysaccharidosis, type II (MPS II) (2022). The adoption of SCID and CCHD newborn screening by programs in all 50 states and three territories (Washington, D.C.; Guam; and Puerto Rico) took 8.6 and 6.8 years, respectively. As of December 2022, 37 programs screen for Pompe, 34 for MPS I, 32 for X-ALD, and 48 for SMA. The pace of implementation based on the average additional number of NBS programs per year was most rapid for SMA (11.3), followed by CCHD (7.8), SCID (6.2), MPS I (5.4), Pompe (4.9), and X-ALD (4.7).

12.
Pediatrics ; 151(5)2023 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-37057490

RESUMEN

BACKGROUND: Postoperative pneumonia is the third most common surgical complication and can seriously impair surgical rehabilitation and lead to related morbidity and mortality. We evaluated the temporal trends in racial and ethnic disparities in postoperative pneumonia and quantified the economic burden resulting from these inequalities in the United States. METHODS: This population-based study includes 195 028 children (weighted to 964 679) admitted for elective surgery across 5340 US hospitals reporting to the Nationwide Inpatient Sample between 2010 and 2018. We estimated the risk-adjusted incidence of postoperative pneumonia, comparing racial and ethnic groups. We also quantified the inflation-adjusted hospital costs attributable to racial and ethnic disparities in postoperative pneumonia. RESULTS: The risk-adjusted rates of pneumonia declined across all racial and ethnic categories, with Black children having the lowest annual rate of decline (Black: 0.03 percentage points, Hispanic: 0.05 percentage points, white: 0.05 percentage points). The risk-adjusted rates of pneumonia trended consistently higher for Black and Hispanic children, relative to white children, throughout the study period (Black versus white: relative risk, 1.31 (95% confidence interval, 1.14-1.51), P < .01; Hispanic versus white: relative risk, 1.16 (95% confidence interval, 1.02-1.32), P = .02). These disparities did not narrow significantly over time. During the study period, the excess hospitalization cost attributable to racial and ethnic disparities in postoperative pneumonia was $24 533 458 for Black children and $26 200 783 for Hispanic children (total, $50 734 241). CONCLUSIONS: Against the backdrop of decreasing postoperative pneumonia, Black and Hispanic children continue to experience higher rates compared with white children. These persistent disparities in postoperative pneumonia were associated with considerable excess cost of surgical care.


Asunto(s)
Etnicidad , Neumonía , Niño , Humanos , Estados Unidos/epidemiología , Hispánicos o Latinos , Grupos Raciales , Población Negra , Neumonía/epidemiología , Disparidades en Atención de Salud
15.
Pediatr Cardiol ; 44(2): 472-478, 2023 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36454266

RESUMEN

Children with congenital heart defects (CHDs) are at risk for poor academic performance. The degree to which receipt of health care services is associated with adverse academic outcomes is not known. We examined the association between episodes of cardiac care and third-grade performance in children with CHD. We identified subjects between 1/1/2008 and 4/30/2012 among 5 centers in North Carolina. We classified children by CHD type and linked subjects to the state educational records. Any inpatient or outpatient cardiac encounter on a date of service was considered an encounter. We calculated the number of encounters by adding the number of inpatient or outpatient cardiac visits prior to the date of the end-of-grade (EOG) tests. We estimated the odds of failing third-grade reading or math EOG tests by episodes of care stratified at the 50th percentile, controlling for CHD type, maternal education, sex, race/ethnicity, birth weight, and gestational age. A total of 184 children had third-grade EOG scores linked to health care records. The median number of episodes of care was 4 (range: 1-60). Those with visits ˃ 50th percentile (> 4 encounters/year over the 4.3 year observation period) had 2.09 (95% CI 1.04, 4.21) greater odds of failing the math EOG compared to those ≤ 50th percentile (1-4 encounters). The third-grade math score declined by 1.5 points (P < 0.008) for every 10 episodes of care. There was no association of episodes of care on third-grade reading performance. Children with CHD with > 4 episodes of cardiac care/year may be at risk for delays in third-grade academic performance. Strategies to minimize school absenteeism may improve academic success in this population.


Asunto(s)
Rendimiento Académico , Cardiopatías Congénitas , Humanos , Niño , Escolaridad , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/terapia , Instituciones Académicas , North Carolina/epidemiología
16.
Genet Med ; 25(2): 100330, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36445366

RESUMEN

Mucopolysaccharidosis type II (MPS II), also known as Hunter syndrome, is an X-linked condition caused by pathogenic variants in the iduronate-2-sulfatase gene. The resulting reduced activity of the enzyme iduronate-2-sulfatase leads to accumulation of glycosaminoglycans that can progressively affect multiple organ systems and impair neurologic development. In 2006, the US Food and Drug Administration approved idursulfase for intravenous enzyme replacement therapy for MPS II. After the data suggesting that early treatment is beneficial became available, 2 states, Illinois and Missouri, implemented MPS II newborn screening. Following a recommendation of the Advisory Committee on Heritable Disorders in Newborns and Children in February 2022, in August 2022, the US Secretary of Health and Human Services added MPS II to the Recommended Uniform Screening Panel, a list of conditions recommended for newborn screening. MPS II was added to the Recommended Uniform Screening Panel after a systematic evidence review reported the accuracy of screening, the benefit of presymptomatic treatment compared with usual case detection, and the feasibility of implementing MPS II newborn screening. This manuscript summarizes the findings of the evidence review that informed the Advisory Committee's decision.


Asunto(s)
Iduronato Sulfatasa , Mucopolisacaridosis II , Niño , Humanos , Recién Nacido , Estados Unidos , Mucopolisacaridosis II/diagnóstico , Mucopolisacaridosis II/genética , Tamizaje Neonatal , Ácido Idurónico , Iduronato Sulfatasa/uso terapéutico , Glicosaminoglicanos , Terapia de Reemplazo Enzimático/métodos
17.
Pediatr Rev ; 43(11): 631-642, 2022 Nov 01.
Artículo en Inglés | MEDLINE | ID: mdl-36316262

RESUMEN

By age 18, one in fourteen American children has had a parent incarcerated. Although children from all backgrounds experience parental incarceration, racial and ethnic minority groups and those living in poverty are disproportionately affected. Parental incarceration is an adverse childhood experience that can negatively affect health and well-being over the life course. However, resilient children of incarcerated parents can flourish despite profound adversity. Pediatric providers should create safe, inclusive medical homes that foster sensitive disclosures and discussions about parental incarceration. If pediatric providers identify parental incarceration, they should promote foundational relationships and family resilience (including relationships with incarcerated parents when appropriate) and consider referrals to mental health specialists and specialized programs for children of incarcerated parents. Pediatric providers are also uniquely positioned to advocate for partnerships and policies that support children of incarcerated parents.


Asunto(s)
Prisioneros , Resiliencia Psicológica , Niño , Humanos , Estados Unidos , Adolescente , Prisioneros/psicología , Etnicidad , Salud de la Familia , Grupos Minoritarios , Padres/psicología
18.
World J Pediatr Congenit Heart Surg ; 13(6): 707-715, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-36300264

RESUMEN

BACKGROUND: The AHA/ACC Adult Congenital Heart Disease guidelines recommend that most adults with congenital heart disease (CHD) follow-up with CHD cardiologists every 1 to 2 years because longer gaps in care are associated with adverse outcomes. This study aimed to determine the proportion of patients in North Carolina who did not have recommended follow-up and to explore predictors of loss to follow-up. METHODS: Patients ages ≥18 years with a healthcare encounter from 2008 to 2013 in a statewide North Carolina database with an ICD-9 code for CHD were assessed. The proportion with cardiology follow-up within 24 months following index encounter was assessed with Kaplan-Meier estimates. Cox regression was utilized to identify demographic factors associated with differences in follow-up. RESULTS: 2822 patients were identified. Median age was 35 years; 55% were female. 70% were white, 22% black, and 3% Hispanic; 36% had severe CHD. The proportion with 2-year cardiology follow-up was 61%. Those with severe CHD were more likely to have timely follow-up than those with less severe CHD (72% vs 55%, P < .01). Black patients had a lower likelihood of follow-up than white patients (56% vs 64%, P = .01). Multivariable Cox regression identified younger age, non-severe CHD, and non-white race as risk factors for a lower likelihood of follow-up by 2 years. CONCLUSION: 39% of adults with CHD in North Carolina are not meeting AHA/ACC recommendations for follow-up. Younger and minority patients and those with non-severe CHD were particularly vulnerable to inadequate follow-up; targeted efforts to retain these patients in care may be helpful.


Asunto(s)
Cardiología , Cardiopatías Congénitas , Adulto , Humanos , Femenino , Adolescente , Masculino , Cardiopatías Congénitas/epidemiología , Cardiopatías Congénitas/cirugía , Estudios de Seguimiento , North Carolina/epidemiología , Factores de Riesgo
20.
Pediatrics ; 150(3)2022 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-35927519

RESUMEN

CONTEXT: Severe hyperbilirubinemia is associated with kernicterus. Informed guidance on hyperbilirubinemia management, including preventive treatment thresholds, is essential to safely minimize neurodevelopmental risk. OBJECTIVE: To update the evidence base necessary to develop the 2022 American Academy of Pediatrics clinical practice guideline for management of hyperbilirubinemia in the newborn infant ≥35 weeks' gestation. DATA SOURCE: PubMed. STUDY SELECTION: English language randomized controlled trials and observational studies. Excluded: case reports or series, nonsystematic reviews, and investigations focused on <35-weeks' gestation infants. DATA EXTRACTION: Topics addressed in the previous clinical practice guideline (2004) and follow-up commentary (2009) were updated with new evidence published through March 2022. Evidence reviews were conducted for previously unaddressed topics (phototherapy-associated adverse effects and effectiveness of intravenous immune globulin [IVIG] to prevent exchange transfusion). RESULTS: New evidence indicates that neurotoxicity does not occur until bilirubin concentrations are well above the 2004 exchange transfusion thresholds. Systematic review of phototherapy-associated adverse effects found limited and/or inconsistent evidence of late adverse effects, including cancer and epilepsy. IVIG has unclear benefit for preventing exchange transfusion in infants with isoimmune hemolytic disease, with a possible risk of harm due to necrotizing enterocolitis. LIMITATIONS: The search was limited to 1 database and English language studies. CONCLUSIONS: Accumulated evidence justified narrowly raising phototherapy treatment thresholds in the updated clinical practice guideline. Limited evidence for effectiveness with some evidence of risk of harm support the revised recommendations to limit IVIG use.


Asunto(s)
Enfermedades del Sistema Digestivo , Hiperbilirrubinemia Neonatal , Kernicterus , Niño , Recambio Total de Sangre , Femenino , Edad Gestacional , Humanos , Hiperbilirrubinemia Neonatal/diagnóstico , Hiperbilirrubinemia Neonatal/terapia , Inmunoglobulinas Intravenosas , Recién Nacido , Kernicterus/diagnóstico , Kernicterus/etiología , Kernicterus/prevención & control , Fototerapia , Embarazo
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