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

囊性纤维化青少年和年轻人医疗保健转型的期望和结果

• 批准号: 10313440
• 负责人: Katherine T Melton
• 金额: $ 4.6万
• 依托单位: COLUMBIA UNIVERSITY HEALTH SCIENCES
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-16 至 2023-09-15
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10313440
• 关键词: 18 year old; Academic Medical Centers; Address; Adolescent; Adolescent Development; Adolescent and Young Adult; Adult; Age; Age Factors; Ambulatory Care; Area; Behavioral; Caring; Childhood; Chronic; Clinic Visits; Clinical; Continuity of Patient Care; Cystic Fibrosis; Data; Data Analyses; Deterioration; Development; Disease; Doctor of Philosophy; Evaluation; Family; Fellowship; Foundations; Goals; Health; Healthcare; Healthcare Systems; Healthy People 2020; Individual; Insurance Coverage; Interview; Knowledge; Life Expectancy; Link; Literature; Longevity; Lung diseases; Maintenance; Measures; Medical; Mentorship; Methodology; Methods; Modeling; Movement; National Institute of Nursing Research; National Research Service Awards; Nurses; Nutritional status; Outcome; Parents; Perception; Personal Satisfaction; Population; Preparation; Process; Protocols documentation; Readiness; Records; Registries; Research; Research Methodology; Research Priority; Resources; Risk; Safety; Sampling; School Nursing; Science; Scientist; Self Management; Source; Standardization; Structure; Training; United States; Universities; Visit; Work; Youth; behavioral outcome; care outcomes; care providers; children with cystic fibrosis; comorbidity; data access; evidence base; expectation; experience; improved; insight; nutrition; outpatient programs; patient registry; pre-doctoral; programs; pulmonary function; recruit; sex

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.

项目总结/摘要。患有囊性纤维化（CF）的青少年和年轻人（AYAs）处于危险之中 在从儿科到成人门诊的过渡期间， 在乎医疗保健转型是从儿科到成人护理的有计划和有目的的运动。整个CF 护理中心，过渡准备做法不标准化，结果不佳， 建议的护理和随后的临床恶化仍然发生。缺乏标准化的部分原因是 对当前过渡准备方案的成果评估不足。此外，还有一个差距， 在定性文献中，AYA和父母对美国医疗保健转型的看法。填充 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AYA 这些过渡计划最终将改善患有CF的AYA的医疗过渡结果。目标 本研究的目的是评估AYAs当前过渡准备计划的过渡后结果 与CF，并探讨青少年CF和父母的期望和医疗保健过渡的看法。 这项研究符合国家护理研究所的自我管理优先领域。此外，本发明还 这项研究符合2020年健康人的目标，即“改善健康发展，健康，安全， 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，并改善与CF的AYA过渡准备过程。扩大 将使用青少年和青年准备过渡的社会生态模式来指导这一混合模式， 方法研究该框架通过解决多个问题，提供了医疗保健转型的整体视图 影响过渡准备和过渡后结果的因素。为了达到定量研究的目的， 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 推荐的门诊护理和参与护理）比较参加结构化 过渡准备计划相比，那些谁没有在一个大的，城市，学术医疗中心。我们 将使用囊性纤维化基金会患者登记处和CF R.I.S.E.的数据。过渡方案 参与记录，以实现这一目标。通过半结构化访谈达到定性的目的 与15名青少年CF/父母二人组。这项研究将得到一个强大的导师团队的支持， 受益于哥伦比亚大学护理学院提供的许多资源。一个既定 与2个CF护理中心（1个成人，1个儿科）的合作关系将促进招募和数据收集 access.本研究的结果将丰富医疗转型的文献，促进 AYA和以家庭为中心的过渡准备计划，以改善患有CF的AYA的过渡结果。