Aguilera Antonio M, Wood David L, Keeley Cortney, James Hector E, Aldana Philipp R
University of Florida College of Medicine, Gainesville, Florida.
Department of Pediatrics, Quillen College of Medicine, East Tennessee State University, Johnson City, Tennessee; and.
J Neurosurg Pediatr. 2016 Feb;17(2):203-207. doi: 10.3171/2015.7.PEDS14694. Epub 2015 Oct 23.
OBJECT The transition of the young adult with spina bifida (YASB) from pediatric to adult health care is considered a priority by organized pediatrics. There is a paucity of transition programs and related studies. Jacksonville Health and Transition Services (JaxHATS) is one such transition program in Jacksonville, Florida. This study's purpose was to evaluate the health care access, utilization, and quality of life (QOL) of a group of YASBs who have transitioned from pediatric care. METHODS A survey tool addressing access to health care and quality of health and life was developed based on an established survey. Records of the Spinal Defects Clinic held at Wolfson Children's Hospital and JaxHATS Clinic were reviewed and YASBs (> 18 and < 30 years old) were identified. RESULTS Ten of the 12 invited YASBs in the Jacksonville area completed the surveys. The mean age of respondents was 25.1 years. All reported regular medical home visits, 8 with JaxHATS and 2 with other family care groups. All reported easy access to medical care and routine visits to spina bifida (SB) specialists; none reported difficulty or delays in obtaining health care. Only 2 patients required emergent care in the last year for an SB-related medical problem. Seven respondents reported very good to excellent QOL. Family, lifestyle, and environmental factors were also examined. CONCLUSIONS In this small group of YASBs with a medical home, easy access to care for medical conditions was the norm, with few individuals having recent emergency visits and almost all reporting at least a good overall QOL. Larger studies of YASBs are needed to evaluate the positive effects of medical homes on health and QOL in this population.
目的 患有脊柱裂的青年成人(YASB)从儿科医疗向成人医疗的过渡被有组织的儿科学视为一项优先事项。过渡项目及相关研究匮乏。杰克逊维尔健康与过渡服务(JaxHATS)是佛罗里达州杰克逊维尔的此类过渡项目之一。本研究的目的是评估一组已从儿科医疗过渡的YASB的医疗保健可及性、利用情况及生活质量(QOL)。方法 基于一项既定调查开发了一种用于评估医疗保健可及性及健康和生活质量的调查工具。查阅了沃尔夫森儿童医院脊柱缺陷诊所和JaxHATS诊所的记录,并确定了年龄在18岁至30岁之间的YASB。结果 杰克逊维尔地区受邀的12名YASB中有10名完成了调查。受访者的平均年龄为25.1岁。所有人都报告有定期的家庭医疗就诊,其中8人就诊于JaxHATS,2人就诊于其他家庭护理组。所有人都报告易于获得医疗保健并能定期拜访脊柱裂(SB)专科医生;无人报告在获得医疗保健方面有困难或延误。去年只有2名患者因与SB相关的医疗问题需要急诊护理。7名受访者报告生活质量非常好至优秀。还对家庭、生活方式和环境因素进行了调查。结论 在这一小群有家庭医疗的YASB中,易于获得医疗状况护理是常态,很少有人近期有急诊就诊,几乎所有人都报告总体生活质量至少良好。需要对YASB进行更大规模的研究,以评估家庭医疗对该人群健康和生活质量的积极影响。