Department of Pediatrics, Indiana University School of Medicine, Riley Hospital for Children, Indianapolis, 46220, USA.
J Adolesc Health. 2012 Sep;51(3):272-8. doi: 10.1016/j.jadohealth.2011.12.016. Epub 2012 Mar 3.
To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program.
A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005-2006 National Survey of Children with Special Health Care Needs.
Forty-four percent of surveys were returned. Average age of youth was 17.5 (11-22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005-2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%).
Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.
评估参加综合性、非分类过渡项目的有特殊医疗需求的青年和年轻成年人的健康、功能特征和医疗服务需求。
从国家健康调查和临床经验中开发了一份自我管理调查，以评估被认为对成功过渡到成年期很重要的概念。调查邮寄给参加过渡诊所的 198 名有特殊医疗需求的青年和年轻成年人的父母。父母被问及青年的健康、功能状况和所需的医疗服务。临床数据库提供了人口统计学和患者健康特征。结果与 2005-2006 年全国特殊健康需求儿童调查进行了比较。
44%的调查被返回。青年的平均年龄为 17.5 岁（11-22 岁），诊断包括脑瘫（36%）、脊柱裂（10%）、发育迟缓或唐氏综合征（17%）和自闭症（6%）。大多数青年需要帮助进行个人护理（69%）和日常需求（91%），并使用辅助设备（59%）。与 2005-2006 年全国特殊健康需求儿童调查相比，父母报告说所有服务的需求都更高，除了心理健康保健和烟草或物质使用咨询。43%的父母报告至少有一项未满足的健康需求。很少有父母报告需要物质使用咨询（1%）、性健康筛查（16%）、营养（34%）和运动（41%）。
参加我们过渡项目的青年有更多的功能限制、较差的健康状况报告、不同的诊断分布和更高水平的所需医疗服务。很少有父母确定需要其他推荐的青少年预防服务。过渡项目应评估患者的健康特征和服务需求，以设计有效的以患者为中心的服务。
