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      Enhancing Pediatric Palliative Care for Latino Children and Their Families: A Review of the Literature and Recommendations for Research and Practice in the United States

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          Abstract

          As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative review of literature related to PC for Latino children and their families in the United States. In the United States, Latinos face multiple barriers that affect their receipt of PC, including poverty, lack of access to health insurance, language barriers, discrimination, and cultural differences. Pediatric PC research and clinical initiatives that target the needs of Latino families are sparse, underfunded, but essential. Education of providers on Latino cultural values is necessary. Additionally, advocacy efforts with a focus on equitable care and policy reform are essential to improving the health of this vulnerable population.

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          20-year survival of children born with congenital anomalies: a population-based study.

          Peter WG Tennant, Mark S. Pearce, Mary Bythell … (2010)
          Congenital anomalies are a leading cause of perinatal and infant mortality. Advances in care have improved the prognosis for some congenital anomaly groups and subtypes, but there remains a paucity of knowledge about survival for many others, especially beyond the first year of life. We estimated survival up to 20 years of age for a range of congenital anomaly groups and subtypes. Information about children with at least one congenital anomaly, delivered between 1985 and 2003, was obtained from the UK Northern Congenital Abnormality Survey (NorCAS). Anomalies were categorised by group (the system affected), subtype (the individual disorder), and syndrome according to European Surveillance of Congenital Anomalies (EUROCAT) guidelines. Local hospital and national mortality records were used to identify the survival status of liveborn children. Survival up to 20 years of age was estimated by use of Kaplan-Meier methods. Cox proportional hazards regression was used to examine factors that affected survival. 13,758 cases of congenital anomaly were notified to NorCAS between 1985 and 2003. Survival status was available for 10 850 (99.0%) of 10 964 livebirths. 20-year survival was 85.5% (95% CI 84.8-86.3) in individuals born with at least one congenital anomaly, 89.5% (88.4-90.6) for cardiovascular system anomalies, 79.1% (76.7-81.3) for chromosomal anomalies, 93.2% (91.6-94.5) for urinary system anomalies, 83.2% (79.8-86.0) for digestive system anomalies, 97.6% (95.9-98.6) for orofacial clefts, and 66.2% (61.5-70.5) for nervous system anomalies. Survival varied between subtypes within the same congenital anomaly group. The proportion of terminations for fetal anomaly increased throughout the study period (from 12.4%, 9.8-15.5, in 1985 to 18.3%, 15.6-21.2, in 2003; p<0.0001) and, together with year of birth, was an independent predictor of survival (adjusted hazard ratio [HR] for proportion of terminations 0.95, 95% CI 0.91-0.99, p=0.023; adjusted HR for year of birth 0.94, 0.92-0.96, p<0.0001). Estimates of survival for congenital anomaly groups and subtypes will be valuable for families and health professionals when a congenital anomaly is detected, and will assist in planning for the future care needs of affected individuals. BDF Newlife. Copyright 2010 Elsevier Ltd. All rights reserved.
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            Racial and Ethnic Disparities in Health Care Access and Utilization Under the Affordable Care Act

            Jie Chen, Arturo Vargas Bustamante, Karoline Mortensen … (2016)
            Objective: To examine racial and ethnic disparities in health care access and utilization after the Affordable Care Act (ACA) health insurance mandate was fully implemented in 2014. Research Design: Using the 2011–2014 National Health Interview Survey, we examine changes in health care access and utilization for the nonelderly US adult population. Multivariate linear probability models are estimated to adjust for demographic and sociodemographic factors. Results: The implementation of the ACA (year indicator 2014) is associated with significant reductions in the probabilities of being uninsured (coef=−0.03, P<0.001), delaying any necessary care (coef=−0.03, P<0.001), forgoing any necessary care (coef=−0.02, P<0.001), and a significant increase in the probability of having any physician visits (coef=0.02, P<0.001), compared with the reference year 2011. Interaction terms between the 2014 year indicator and race/ethnicity demonstrate that uninsured rates decreased more substantially among non-Latino African Americans (African Americans) (coef=−0.04, P<0.001) and Latinos (coef=−0.03, P<0.001) compared with non-Latino whites (whites). Latinos were less likely than whites to delay (coef=−0.02, P<0.001) or forgo (coef=−0.02, P<0.001) any necessary care and were more likely to have physician visits (coef=0.03, P<0.005) in 2014. The association between year indicator of 2014 and the probability of having any emergency department visits is not significant. Conclusions: Health care access and insurance coverage are major factors that contributed to racial and ethnic disparities before the ACA implementation. Our results demonstrate that racial and ethnic disparities in access have been reduced significantly during the initial years of the ACA implementation that expanded access and mandated that individuals obtain health insurance.
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              Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services.

              William Haynes, Alexander J Geyer, Jessica Neff … (2001)
              Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do not know, however, the extent of this population or how it is changing over time. To identify trends over the past 2 decades in the pattern of deaths attributable to pediatric CCCs, examining counts and rates of CCC-attributed deaths by cause and age (infancy: <1 year old, childhood: 1-9 years old, adolescence or young adulthood: 10-24 years old) at the time of death, and to determine the average number of children living within the last 6 months of their lives. We conducted a retrospective cohort study using national death certificate data and census estimates from the National Center for Health Statistics. Participants included all people 0 to 24 years old in the United States from 1979 to 1997. CCCs comprised a broad array of International Classification of Diseases, Ninth Revision codes for cardiac, malignancy, neuromuscular, respiratory, renal, gastrointestinal, immunodeficiency, metabolic, genetic, and other congenital anomalies. Trends of counts and rates were tested using negative binomial regression. Of the 1.75 million deaths that occurred in 0- to 24-year-olds from 1979 to 1997, 5% were attributed to cancer CCCs, 16% to noncancer CCCs, 43% to injuries, and 37% to all other causes of death. Overall, both counts and rates of CCC-attributed deaths have trended downward, with declines more pronounced and statistically significant for noncancer CCCs among infants and children, and for cancer CCCs among children, adolescents, and young adults. In 1997, deaths attributed to all CCCs accounted for 7242 infant deaths, 2835 childhood deaths, and 5109 adolescent deaths. Again, in 1997, the average numbers of children alive who would die because of a CCC within the ensuing 6-month period were 1097 infants, 1414 children, and 2548 adolescents or young adults. Population-based planning of pediatric supportive care services should use measures that best inform our need to provide care for time-limited events (perideath or bereavement care) versus care for ongoing needs (home nursing or hospice). Pediatric supportive care services will need to serve patients with a broad range of CCCs from infancy into adulthood.
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                Author and article information

                Journal
                Journal ID (nlm-ta): Children (Basel)
                Journal ID (iso-abbrev): Children (Basel)
                Journal ID (publisher-id): children
                Title: Children
                Publisher: MDPI
                ISSN (Electronic): 2227-9067
                Publication date (Electronic): 22 December 2017
                Publication date Collection: January 2018
                Volume: 5
                Issue: 1
                Electronic Location Identifier: 2
                Affiliations
                [1 ]Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD 21205, USA; smunozb1@ 123456jhmi.edu (S.M.-B.); pdonohue@ 123456jhmi.edu (P.K.D.)
                [2 ]Clinical Ethics, Johns Hopkins Berman Institute of Bioethics, Baltimore, MD 21205, USA; jraisan1@ 123456jhu.edu
                [3 ]Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD 21205, USA
                Author notes
                [* ]Correspondence: rboss1@ 123456jhmi.edu ; Tel.: +1-410-614-5635
                Author information
                https://orcid.org/0000-0001-9227-9309
                Article
                Publisher ID: children-05-00002
                DOI: 10.3390/children5010002
                PMC ID: 5789284
                PubMed ID: 29271924
                SO-VID: 698d8c1a-a761-4458-9c57-f37078384479
                Copyright © © 2017 by the authors.
                License:

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                Date received : 17 November 2017
                Date accepted : 20 December 2017
                Categories
                Subject: Review

                Keywords: pediatric palliative care,latino health,chronic illness,children with medical complexity
                Data availability:
                Keywords: pediatric palliative care, latino health, chronic illness, children with medical complexity

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