South Carolina Study for Adolescents and Young Adults with Rare Conditions

南卡罗来纳州针对患有罕见疾病的青少年和年轻人的研究

基本信息

批准号：
8507475
负责人：
SUZANNE W MCDERMOTT
金额：
$ 40.22万
依托单位：
UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA
依托单位国家：
美国
项目类别：
财政年份：
2011
资助国家：
美国
起止时间：
2011-09-30 至 2014-12-29
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8507475
关键词：
South Carolina Study Adolescents Young

项目摘要

PROJECT ABSTRACT The proposed South Carolina project will be a collaboration between and the University of South Carolina and the South Carolina State government (Budget and Control Board- Office for Research and Statistics). This project is possible because South Carolina has the potential to answer important questions about the health and welfare of adolescents and young adults with rare diseases using de-identified (anonymous) data from numerous agencies. For the 15-24 year age group, using only two data sources, the Hospital Discharge Data Set (HDDS) and Medicaid for the period 2000-2009, we have already identified 83 adolescents and young adults with fragile X syndrome, 635 with spinal bifida and 224 with muscular dystrophy. The project will have two parts: cross-sectional (a single point in time) and longitudinal (looking at people over an extended time period) and the study group will be 15-24 year olds with spina bifida, muscular dystrophy and fragile X syndrome. We will use linked administrative datasets (such as Medicaid, State Department of Education, and Vocational Rehabilitation) to describe the well-being and service use of the study group. We will estimate the prevalence of these conditions, their health status, educational, and employment participation. We will estimate the age specific prevalence for each condition and describe the occurrence of other acute and chronic medical conditions, including diabetes mellitus, obesity, heart disease, respiratory disease and other conditions. We will also describe the incidence and prevalence of co-morbid and secondary conditions and the co-occurrence of intellectual disability, paralysis, epilepsy, attention deficit hyperactivity disorder, and other conditions. We will also describe the frequency and type of health care received by each group, including rates of hospitalization, emergency department visits, and outpatient services, and the cost-effectiveness of different approaches to care. In the second and third year of the grant we will interview 125 affected individuals and their families to describe the living situation, education, employment, and other markers of social participation by adolescents and young adults with the three conditions, using the questionnaires from the National Longitudinal Transition Study and the RAND 36. We will describe the transition that occurs as adolescents with each condition mature into young adulthood, in terms of health care and social services (including type and specialty of health care provider by specialty, physical and occupational therapy, speech/language therapy, counseling and other services). Finally, we plan to assess the ability of other states to conduct the linked administrative data analyses and make recommendations that will be generalizable.

项目摘要拟议的南卡罗来纳州项目将是南卡罗来纳大学和南卡罗来纳州政府（预算和控制委员会 - 研究和统计办公室）。这该项目之所以可行，是因为南卡罗来纳州有潜力回答有关健康的重要问题使用来自以下机构的去识别化（匿名）数据来评估患有罕见疾病的青少年和年轻人的福利众多机构。对于15-24岁年龄组，仅使用两个数据源：医院出院数据根据 2000 年至 2009 年期间的 (HDDS) 和医疗补助计划，我们已经确定了 83 名青少年和年轻人患有脆性 X 综合征的成年人、635 名患有脊柱裂的成年人和 224 名患有肌营养不良症的成年人。该项目将分为两个部分：横截面（单个时间点）和纵向（观察人们的情况）延长的时间段），研究组将是 15-24 岁患有脊柱裂、肌肉萎缩症和脆性X综合征。我们将使用链接的管理数据集（例如医疗补助、国务院教育和职业康复）来描述研究小组的福祉和服务使用情况。我们将估计这些疾病的患病率、他们的健康状况、教育和就业参与度。我们将估计每种病症的特定年龄患病率，并描述其他急性和慢性疾病的发生情况慢性疾病，包括糖尿病、肥胖、心脏病、呼吸系统疾病和其他疾病状况。我们还将描述共病和继发性疾病的发生率和患病率以及智力障碍、瘫痪、癫痫、注意力缺陷多动障碍等同时发生状况。我们还将描述每个群体接受医疗保健的频率和类型，包括费率住院、急诊和门诊服务的次数，以及不同服务的成本效益护理方法。在拨款的第二年和第三年，我们将采访 125 名受影响的个人，并家人描述生活状况、教育、就业和其他社会参与标志使用国家调查问卷对患有这三种情况的青少年和年轻人进行调查纵向转变研究和 RAND 36。我们将描述青少年时期发生的转变随着每种情况成熟到成年早期，在医疗保健和社会服务方面（包括类型以及医疗保健提供者的专科、物理和职业治疗、言语/语言治疗、咨询和其他服务）。最后，我们计划评估其他国家开展相关联的能力行政数据分析并提出可推广的建议。

项目成果

期刊论文数量（7）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Skin Ulcers and Mortality Among Adolescents and Young Adults With Spina Bifida in South Carolina During 2000-2010.

DOI：
10.1177/0883073815596611
发表时间：
2016-03
期刊：
Journal of child neurology
影响因子：
1.9
作者：
Cai B;McDermott S;Wang Y;Royer JA;Mann JR;Hardin JW;Ozturk O;Ouyang L
通讯作者：
Ouyang L

Emergency department and inpatient hospitalizations for young people with fragile X syndrome.

患有脆性 X 综合征的年轻人的急诊室和住院治疗。

DOI：
10.1352/1944-7558-120.3.230
发表时间：
2015
期刊：
American journal on intellectual and developmental disabilities
影响因子：
0
作者：
McDermott,Suzanne;Hardin,JamesW;Royer,JulieA;Mann,JoshuaR;Tong,Xin;Ozturk,OrgulD;Ouyang,Lijing
通讯作者：
Ouyang,Lijing

Use of state administrative data sources to study adolescents and young adults with rare conditions.

利用国家行政数据源研究患有罕见疾病的青少年和年轻人。

DOI：
10.1007/s11606-014-2925-7
发表时间：
2014
期刊：
Journal of general internal medicine
影响因子：
5.7
作者：
Royer,JA;Hardin,JW;McDermott,S;Ouyang,L;Mann,JR;Ozturk,OD;Bolen,J
通讯作者：
Bolen,J

Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability.

开发一个工具来描述残疾青少年和年轻人的整体健康、社会独立性和活动限制。

DOI：
10.1016/j.ridd.2014.12.009
发表时间：
2015
期刊：
Research in developmental disabilities
影响因子：
3.1
作者：
Deroche,ChelseaB;Holland,MargaretM;McDermott,Suzanne;Royer,JulieA;Hardin,JamesW;Mann,JoshuaR;Salzberg,Deborah;Ozturk,Orgul;Ouyang,Lijing
通讯作者：
Ouyang,Lijing

Inpatient and emergency room visits for adolescents and young adults with spina bifida living in South Carolina.

DOI：
10.1016/j.pmrj.2014.11.011
发表时间：
2015-05
期刊：
PM & R : the journal of injury, function, and rehabilitation
影响因子：
0
作者：
Mann JR;Royer JA;Turk MA;McDermott S;Holland MM;Ozturk OD;Hardin JW;Thibadeau JK
通讯作者：
Thibadeau JK