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      Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement

      , , , , Supporting Access for Everyone Consensus Panel
      Pediatrics
      American Academy of Pediatrics (AAP)

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          Abstract

          Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

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          Global Burden of Disease and the Impact of Mental and Addictive Disorders

          This contribution reviews the newest empirical evidence regarding the burden of mental and addictive disorders and weighs their importance for global health in the first decades of the twenty-first century.
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            The health status of adults on the autism spectrum.

            Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive-compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson's disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.
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              Nominal group technique: an effective method for obtaining group consensus.

              This paper aims to demonstrate the versatility and application of nominal group technique as a method for generating priority information. Nominal group technique was used in the context of four focus groups involving clinical experts from the emergency department (ED) and obstetric and midwifery areas of a busy regional hospital to assess the triage and management of pregnant women in the ED. The data generated were used to create a priority list of discussion triggers for the subsequent Participatory Action Research Group. This technique proved to be a productive and efficient data collection method which produced information in a hierarchy of perceived importance and identified real world problems. This information was vital in initiating the participatory action research project and is recommended as an effective and reliable data collection method, especially when undertaking research with clinical experts. © 2012 Blackwell Publishing Asia Pty Ltd.
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                Author and article information

                Journal
                Pediatrics
                American Academy of Pediatrics (AAP)
                0031-4005
                1098-4275
                May 01 2024
                April 10 2024
                May 01 2024
                April 10 2024
                : 153
                : 5
                Article
                10.1542/peds.2023-063809
                6e3d2a8e-4588-4ef2-b239-b6beb985b178
                © 2024
                History

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