RESUMO
OBJECTIVE: To address gaps in routine recommended care for children with Down syndrome, through quality improvement during the coronavirus disease 2019 (COVID-19) pandemic. STUDY DESIGN: A retrospective chart review of patients with Down syndrome was conducted. Records of visits to the Massachusetts General Hospital Down Syndrome Program were assessed for adherence to 5 components of the 2011 American Academy of Pediatrics (AAP) Clinical Report, "Health Supervision for Children with Down Syndrome." The impact of 2 major changes was analyzed using statistical process control charts: a planned intervention of integrations to the electronic health record for routine health maintenance with age-based logic based on a diagnosis of Down syndrome, created and implemented in July 2020; and a natural disruption in care due to the COVID-19 pandemic, starting in March 2020. RESULTS: From December 2018 to March 2022, 433 patients with Down syndrome had 940 visits. During the COVID-19 pandemic, adherence to the audiology component decreased (from 58% to 45%, P < .001); composite adherence decreased but later improved. Ophthalmology evaluation remained stable. Improvement in adherence to 3 components (thyroid-stimulating hormone, hemoglobin, sleep study ever) in July 2020 coincided with electronic health record integrations. Total adherence to the 5 AAP guideline components was greater for follow-up visits compared with new patient visits (69% and 61%, respectively; P < .01). CONCLUSIONS: The COVID-19 pandemic influenced adherence to components of the AAP Health supervision for children with Down syndrome, but improvements in adherence coincided with implementation of our intervention and reopening after the COVID-19 pandemic.
Assuntos
COVID-19 , Síndrome de Down , Criança , Humanos , COVID-19/epidemiologia , Pandemias , Registros Eletrônicos de Saúde , Síndrome de Down/epidemiologia , Síndrome de Down/terapia , Síndrome de Down/diagnóstico , Estudos Retrospectivos , Fidelidade a DiretrizesRESUMO
OBJECTIVE: To evaluate whether racial differences across a variety of medical factors collected in a longitudinal clinical database at a specialty clinical for children with Down syndrome provide insight into contributors to racial disparity in mortality. STUDY DESIGN: Comprehensive medical histories of 763 children receiving medical care at a Down syndrome specialty clinic were retrospectively reviewed regarding prenatal, postnatal, and medical issues, as well as subspecialty referrals. Frequency calculations and logistic regression were performed. The National Death Index was used to query death record databases to correlate medical histories with mortality data. RESULTS: Prenatal drug use and intubation were significantly more frequent, but hyperbilirubinemia was significantly less frequent, in black children compared with white children with Down syndrome. Among children with Down syndrome aged <5 years, significant increases in referral to cardiology were seen for black children compared with white children. Trends were seen in an increased incidence of congenital heart disease for black children. Correlations with death records did not demonstrate differences in rates of cardiac-related deaths. Minimal racial disparity was seen for all other measures investigated. CONCLUSION: Racial disparity in mortality exists, but the underlying cause remains unidentified despite use of a comprehensive, longitudinal database of individuals with Down syndrome and review of death records. Referrals to cardiology might be a clue to the underlying cause, perhaps as an indicator of access to care, but cardiac disease does not account for the disparity in mortality.
Assuntos
Negro ou Afro-Americano/estatística & dados numéricos , Síndrome de Down/etnologia , Síndrome de Down/mortalidade , Disparidades nos Níveis de Saúde , População Branca/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Bases de Dados Factuais , Feminino , Humanos , Estudos Longitudinais , Masculino , Estudos Retrospectivos , Índice de Gravidade de Doença , Adulto JovemRESUMO
OBJECTIVES: To assess whether children with Down syndrome in the US are at an increased risk for obesity, we determined the obesity prevalence and analyzed obesity development throughout childhood in a cohort of children with Down syndrome. In addition, we analyzed a comorbidity that is associated with Down syndrome and obesity, obstructive sleep apnea syndrome (OSAS). STUDY DESIGN: This study was a retrospective chart review that evaluated 303 children ages 2 through 18 years with a diagnosis of Down syndrome. All children were patients at Cincinnati Children's Hospital Medical Center with multiple height and weight measurements. To determine obesity burden, the rate of obesity was compared with a local control cohort using contingency tables. Change in obesity rate through time was determined with mixed models. Association of obesity with OSAS was determined with contingency tables. RESULTS: We evaluated 303 individuals, 47.8% of whom were obese (body mass index ≥95th percentile for age and sex). This was significantly higher than the general pediatric population, which had a 12.1% obesity rate (P < .0001). Body mass index z-scores did not change markedly over time (P = .40). The majority of children with Down syndrome also had OSAS (74.0% of the 177 children who had polysomnography studies). However, OSAS risk was elevated in obese children (risk ratio = 2.4, P = .0015). CONCLUSIONS: Our results indicate that children with Down syndrome are at a substantial risk for obesity and OSAS. These findings support the need for more aggressive weight management in early childhood and throughout the lifespan.
Assuntos
Síndrome de Down/complicações , Obesidade Infantil/complicações , Adolescente , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Polissonografia , Prevalência , Estudos Retrospectivos , Índice de Gravidade de Doença , Apneia Obstrutiva do Sono/complicaçõesRESUMO
OBJECTIVES: To assess adherence to the 2011 American Academy of Pediatrics (AAP) health supervision guidelines for Down syndrome, to determine whether pediatrician education improves adherence, and to evaluate stakeholder attitudes toward these guidelines. STUDY DESIGN: Twenty-two pediatric care sites participated in chart review of adherence to the components of the AAP guidelines for Down syndrome in this longitudinal cohort study. We analyzed universal recommendations which apply to all children with Down syndrome. Thirteen pediatric practices caring for 82 patients with Down syndrome received educational information. Frequency calculations with Bonferroni adjustment of the P value threshold (P = .05/9 = .0056) were performed. Adherence rates were compared between cohorts and within the individual before and after intervention using 2 × 2 contingency tables and goodness-of-fit tests. Pediatricians and parents of children with Down syndrome completed an anonymous survey regarding their attitudes toward the guidelines. RESULTS: Statistically significant increases in adherence were seen in 5 of the 8 universal recommendations following pediatrician education (P ≤ .002), including cardiology and genetics visits, rates of echocardiography, annual audiology testing, and sleep studies by age 4 years. Both physicians and parents reported generally positive views of the guidelines, yet baseline adherence rates were suboptimal. Pediatrician education preferences include directly integrating the guidelines into an electronic medical record system. CONCLUSION: Stakeholder attitudes reflect a willingness to follow the AAP guidelines for Down syndrome. Providing rapid access to simple, clear reminders of recommended assessments successfully improved adherence to the AAP guidelines for Down syndrome.