Advancing the System of Care for Autistic Older Adults

推进自闭症老年人的护理系统

• 批准号: 10523865
• 负责人: Lindsay Lawer Shea
• 金额: $ 36.29万
• 依托单位: DREXEL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-06 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10523865
• 关键词: Acute; Adult; Adverse effects; Age; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; Caregivers; Caring; Characteristics; Child; Chronic; Clinical; Communities; Complement; Data; Data Linkages; Data Set; Dementia; Diagnosis; Economically Deprived Population; Elderly; Emergency Care; Epilepsy; Ethnic group; Family; Funding; General Population; Goals; Health; Health Care Costs; Health Services Accessibility; Healthcare; Hospitalization; Hypertension; Individual; Insurance Carriers; International; Interview; Investments; Life Cycle Stages; Link; Longevity; Machine Learning; Medicaid; Medical; Medical Care Costs; Medicare; Mental Health; Mental Health Services; Methods; Neurologic; Outcome; Parkinson Disease; Parkinsonian Disorders; Participant; Policies; Prevalence; Preventive screening; Public Health; Quality of life; Records; Research; Resources; Risk; Sample Size; Sampling; Science; Services; Source; Stroke; Suicide; Surveys; System; Youth; adolescent with autism spectrum disorder; adult with autism spectrum disorder; advanced system; aged; autism spectrum disorder; autistic; care costs; care outcomes; care systems; cohort; comparative; comparison group; cost; cost estimate; early onset; end of life; experience; health difference; health inequalities; high risk; improved; individuals with autism spectrum disorder; innovation; insight; life time cost; meetings; middle age; mortality; patient oriented; peer; prevent; racial diversity; recruit; service delivery; young adult

PROJECT ABSTRACT The proposed study requests funding to conduct the most comprehensive examination to date of autistic adults (aged 40+) as they age, with the goal of gaining a comprehensive national picture of health and mental health outcomes and service needs. We will use analyses of national Medicaid and Medicare data complemented by surveys and interviews of middle aged and older autistic adults and their caregivers. The majority of research on autism spectrum disorder (ASD) has been focused on youth, but dramatic increases in the prevalence of ASD over the past three decades, the lifelong presentation of ASD, high costs of care in later segments of the lifespan, and the fact that little is known about the estimated 3.5 million autistic adults in the US who are over the age of 40, highlight the urgency of identifying the care needs of aging adults in order to improve health and mental health outcomes, costs of care, and quality of life for individuals and their families. This need for information and clinical guidance is underscored by emerging evidence of the early onset of neurological conditions such as Alzheimer’s Disease and related dementias and Parkinson’s Disease in autistic adults. As the largest healthcare insurers in the US, Medicaid and Medicare are critical sources of care for autistic adults as they age, and claims data provide a vital window for observing the prevalence and emergence of conditions, including specific neurological conditions associated with aging, and studying potentially adverse effects on health and mental health outcomes and service use. By comparing autistic adults to those without autism, we can gain further insight into comparative needs and resources. Medicaid and Medicare data are also optimal sources for studying inequities among economically disadvantaged individuals and diverse racial/ethnic groups who disproportionately experience poorer health and mental health care and subsequent suboptimal outcomes. We will link national Medicaid and Medicare data from 2014-2023, the latest years available, data about mortality, and data about communities for autistic individuals ages 40 through the end of life, and a comparison group of adults without autism. A Community Advisory Board of autistic adults will be engaged to inform a survey of a national sample of 700 autistic adults (or their caregivers), as well as interviews with a subset of survey participants, to yield contextual, real-world information about differences in health and mental health services access and utilization at individual, family, and community levels. Pairing findings from claims data with insights from the lived experiences of aging autistic adults will allow us to drive patient-centered improvements in service delivery to move toward meeting the needs of autistic adults as they age into a period of increased risk for health and mental health diagnoses. This research will generate findings that are poised to identify and inform modifiable components of service delivery through these national insurers, with potential for broad impact on the health of the autistic community.

项目摘要 这项拟议中的研究要求提供资金，以进行迄今为止最全面的自闭症检查。 成年人（40岁以上），因为他们的年龄，以获得一个全面的国家的健康和心理状况的目标 卫生成果和服务需求。我们将使用国家医疗补助和医疗保险数据的分析 辅以对中老年自闭症患者及其照顾者的调查和访谈。的 大多数关于自闭症谱系障碍（ASD）的研究都集中在年轻人身上，但 ASD在过去三十年中的患病率，ASD的终身表现， 这是一个很大的问题，因为人们对世界上大约350万自闭症成年人知之甚少。 40岁以上的美国人，强调确定老年人护理需求的紧迫性， 改善个人及其家庭的健康和心理健康结果、护理成本和生活质量。 这种对信息和临床指导的需要被新出现的证据所强调， 神经系统疾病，如阿尔茨海默病和相关痴呆症和帕金森病， 自闭症成年人作为美国最大的医疗保险公司，医疗补助和医疗保险是护理的关键来源 随着年龄的增长，自闭症成年人的患病率和索赔数据为观察患病率和 条件的出现，包括与衰老相关的特定神经系统疾病，并研究 对健康和心理健康结果以及服务使用的潜在不利影响。通过比较自闭症成年人 对于那些没有自闭症的人，我们可以进一步了解他们的相对需求和资源。医疗补助和 医疗保险数据也是研究经济弱势个体不平等的最佳来源 和不同种族/族裔群体，他们的健康状况和精神卫生保健不成比例地较差， 随后的次优结果。我们将链接2014-2023年的国家医疗补助和医疗保险数据， 年可用，死亡率的数据，以及40岁至2010年自闭症患者社区的数据。 和一组没有自闭症的成年人做比较。一个由自闭症成年人组成的社区咨询委员会 将参与一项对700名自闭症成年人（或他们的照顾者）的全国抽样调查， 与调查参与者的子集进行访谈，以产生关于 在个人、家庭和社区各级获得和利用卫生和精神卫生服务。配对 从老年自闭症患者的生活经历中得出的索赔数据的发现将使我们能够推动 以患者为中心的服务提供改进，以满足自闭症成年人的需求， 年龄进入一个时期的健康和心理健康诊断的风险增加。这项研究将产生一些发现， 准备通过这些国家方案， 保险公司，对自闭症社区的健康产生广泛影响的潜力。