Expectations and Outcomes of Healthcare Transition in Adolescents and Young Adults with Cystic Fibrosis

项目摘要/摘要。患有囊性纤维化(CF)的青少年和年轻人(AYA)面临风险 在从儿科门诊过渡到成人门诊的过程中，护理连续性方面的差距和较差的临床结果 关心。医疗保健过渡是从儿科到成人护理的有计划和有目的的运动。跨配置文件 护理中心，过渡准备做法不标准化，结果不佳，如 推荐的护理和随后的临床恶化仍在发生。缺乏标准化在一定程度上是由于 对当前过渡准备方案成果的评价不足。此外，还有一个差距 在有关Aya的定性文献中，以及美国医疗保健转型的父母视角中。灌装 这些差距将有助于促进建立标准化的、以证据为基础的、以家庭为中心的 过渡计划，最终将改善具有CF的AYA的医疗过渡结果。目标 这项研究的目的是评估AYAS当前过渡准备计划的过渡后结果 并探讨患有慢性萎缩性侧索硬化症的青少年和父母对医疗转型的期望和看法。 这项研究与国家护理研究所的自我管理优先领域一致。另外， 这项研究与健康人群2020年的目标相一致，即“促进健康发展、健康、安全和 青少年和年轻人的福祉“。最终，这项研究将有助于促进成功的、独立的 疾病自我管理，并改进患有慢性萎缩性胃炎的AYAS的过渡准备过程。扩展后的 青少年和准备过渡的年轻人的社会生态模型将被用来指导这一混合- 方法研究。该框架通过解决多个问题，提供了医疗转型的整体视图 影响过渡准备情况和过渡后结果的因素。为了这项研究的量化目标 我们将检查生物医学结果(肺功能和营养状况)和行为结果(连续性 推荐的门诊护理和护理参与度)比较参加结构化 与那些没有在大型、城市、学术医疗中心进行过渡准备计划的人相比。我们 将使用来自囊性纤维化基金会患者登记和CFR.I.S.E.过渡计划的数据 参与记录，以实现这一目标。定性目标将通过半结构化访谈来实现 有15名患有CF/父母二联体的青少年。这项研究将得到一个强大的指导团队的支持，并将 受益于哥伦比亚大学护理学院提供的众多资源。一个老牌的 与2个儿童护理中心(1个成人，1个儿科)的协作关系将促进招募和数据 进入。这项研究的结果将增加关于医疗转型的文献，并促进 AYA和以家庭为中心的过渡准备计划，以改善有CF的AYA的过渡结果。

PROJECT SUMMARY/ ABSTRACT. Adolescents and young adults (AYAs) with cystic fibrosis (CF) are at risk for gaps in continuity of care and poor clinical outcomes during the transition from pediatric to adult outpatient care. Healthcare transition is the planned and purposeful movement from pediatric to adult care. Across CF care centers, transition preparation practices are not standardized and poor outcomes such as gaps in recommended care and subsequent clinical deterioration still occur. This lack of standardization is in part due to insufficient evaluation of the outcomes of current transition preparation programs. Additionally, there is a gap in the qualitative literature on AYA and parent perspectives of healthcare transition in the United States. Filling these gaps would help to promote the creation of standardized, evidence based and AYA and family centered transition programs that would ultimately improve healthcare transition outcomes for AYAs with CF. The aims of this study are to evaluate the post-transition outcomes of a current transition preparation program for AYAs with CF and to explore adolescents with CF and parent expectations and perceptions of healthcare transition. This study aligns with the National Institute of Nursing Research priority area of self-management. Additionally, this study aligns with the Healthy People 2020 goal to “Improve the healthy development, health, safety, and well-being of adolescents and young adults”. Ultimately this study will help to promote successful, independent illness self-management and improve the transition preparation process for AYAs with CF. The expanded socioecological model for adolescent and young adult readiness for transition will be used to guide this mixed- methods study. This framework provides a holistic view of healthcare transition by addressing the multiple factors that influence transition readiness and post-transition outcomes. For the quantitative aim of this study we will examine biomedical outcomes (lung function and nutrition status) and behavioral outcomes (continuity of recommended outpatient care and engagement in care) comparing AYAs who participated in a structured transition preparation program compared to those who did not at a large, urban, academic medical center. We will use data from the Cystic Fibrosis Foundation Patient Registry and CF R.I.S.E. transition program participation records to achieve this aim. The qualitative aim will be achieved though semi-structured interviews with 15 adolescents with CF/parent dyads. This study will be supported by a strong mentorship team and will benefit from the many resources available at Columbia University School of Nursing. An established collaborative relationship with 2 CF Care Centers (1 adult, 1 pediatric) will facilitate recruitment and data access. Results of this study will add to the literature on healthcare transition and promote the development of AYA and family centered transition preparation programs to improve transition outcomes for AYAs with CF.