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 拟议的研究需要资金来进行迄今为止最全面的自闭症检查 成年人（40 岁以上）随着年龄的增长，目标是全面了解全国健康和心理状况 我们将使用对国家医疗补助和医疗保险数据的分析。 辅之以对中年和老年自闭症患者及其照顾者的调查和访谈。 大多数关于自闭症谱系障碍 (ASD) 的研究都集中在青少年，但 过去三十年自闭症谱系障碍的患病率、自闭症谱系障碍的终生表现、以后的高额护理费用 生命周期的各个阶段，以及人们对世界上估计有 350 万自闭症成年人知之甚少的事实 40 岁以上的美国人强调确定老年人护理需求的紧迫性，以便 改善个人及其家庭的健康和心理健康结果、护理成本以及生活质量。 早期发病的新证据强调了对信息和临床指导的需求 神经系统疾病，例如阿尔茨海默病和相关痴呆症以及帕金森病 作为美国最大的医疗保险公司，医疗补助和医疗保险是自闭症成人的重要护理来源。 对于随着年龄增长的自闭症成年人来说，索赔数据为观察患病率和 状况的出现，包括与衰老相关的特定神经系统状况，以及研究 通过比较自闭症成人对健康和心理健康结果以及服务使用的潜在不利影响。 对于那些没有自闭症的人，我们可以进一步了解医疗补助和资源的比较。 医疗保险数据也是研究经济弱势群体不平等的最佳来源 以及不同种族/族裔群体，他们的健康状况和精神卫生保健状况较差，并且 我们将链接 2014 年至 2023 年最新的国家医疗补助和医疗保险数据。 可用年数、死亡率数据以及 40 岁至 40 岁自闭症患者的社区数据 生命终结，以及一组没有自闭症的成年人 一个自闭症成年人社区咨询委员会。 将参与一项针对 700 名自闭症成年人（或其照顾者）的全国样本调查，以及 对一部分调查参与者进行访谈，以获取有关差异的上下文、现实信息 个人、家庭和社区层面的健康和心理健康服务的获取和利用。 索赔数据的发现以及老年自闭症成人生活经历的见解将使我们能够开车 以患者为中心的服务提供改进，以满足自闭症成人的需求 年龄进入健康和心理健康诊断风险增加的时期。 准备通过这些国家确定服务提供的可修改部分并提供信息 保险公司，有可能对自闭症群体的健康产生广泛影响。