SMYLS: A Self-Management Program for Youth Living with Sickle Cell Disease

这个K23：以患者为导向的研究职业发展奖的长期目标是 为了将候选人香农·菲利普斯博士培养成一名独立的调查员，并为她领导大型、 严格设计的随机临床试验，目标是改善患者的症状自我管理 患有镰状细胞病(SCD)的儿童、青少年和青壮年及其家人。患有SCD的个体 经常伴随着繁重的症状生活，如急性和慢性疼痛和疲劳。此外，作为患有疾病的儿童 慢性阻塞性肺病进入青春期和成年期，共病和医疗利用率增加。 促进预防性护理和减少并发症的可扩展自我管理干预措施对以下方面至关重要 改善症状和自我管理、生活质量和医疗保健利用率，符合 美国国家护理研究所的使命。拟议的职业发展计划是 与主要导师Teresa Kelechi博士和候选人的专家指导团队共同开发 通信、技术、统计和特殊人群中的慢性病。该计划建立在 应聘者以前的临床护理、教育和研究经验，以实现以下目标 培训的具体目标：1.在设计干预措施方面培养专门知识，以促进症状和自我 管理；2.掌握进行严格、随机临床试验的技能和知识；3.加强 了解应用移动健康战略接触特殊人群；4.进一步发展作为学者的技能， 包括发展和维持协作的跨学科关系；以及5.发展可持续的 以独立护士科学家的身份资助的研究计划。目标将通过以下方式实现 以下培训方法：一对一、与导师的亲身体验；参与当地和 国家会议、研讨会和研究所；以及正式课程。培训的成果将包括 与申请主题相关的出版手稿，在地方和国家会议上的演讲，以及 NIH R01提交。应聘者将在培训期间获得的技能应用于进行试点研究，以 评估移动健康干预促进青少年疾病患者自我管理行为的可行性 SCD。对过渡准备、身体和心理症状的测量的可变性估计， 医疗保健利用率和生活质量也将得到提高。干预的一个关键焦点将是 与自我管理发展有关的患者与提供者之间的沟通有效性。培训活动 研究将在一家研究密集型机构进行，该机构拥有致力于早期职业生涯的广泛资源 调查人员，包括通过CTSA提供的调查人员，如健康技术应用中心 生活方式和特殊人群计划。在这个奖项结束时，候选人将有很强的 试点可行性数据和必要的培训，为实现包括NIH在内的职业目标做好准备- 资金和症状自我管理的研究轨迹。

The long-term objectives of this K23: Mentored Patient-Oriented Research Career Development Award are to develop the candidate, Dr. Shannon Phillips, into an independent investigator and prepare her to lead large, rigorously designed, randomized clinical trials with the goal of improving symptoms self-management in children, adolescents, and young adults with sickle cell disease (SCD) and their families. Individuals with SCD often live with burdensome symptoms, such as acute and chronic pain and fatigue. Further, as children with SCD transition into adolescence and adulthood, comorbidities and rates of healthcare utilization increase. Scalable self-management interventions that promote preventive care and reduce comorbidities are critical to improving symptom and self-management, quality of life, and healthcare utilization, consistent with the mission of the National Institutes for Nursing Research. The proposed career development plan was developed with Dr. Teresa Kelechi, primary mentor, and the candidate's mentorship team of experts in communication, technology, statistics and chronic conditions in special populations. The plan builds on the candidate's previous clinical nursing, educational, and research experience to accomplish the following training-specific aims: 1. Develop expertise in designing interventions to facilitate symptom and self- management; 2. Attain skills and knowledge to conduct rigorous, randomized clinical trials; 3. Enhance knowledge of applying mHealth strategies to reach special populations; 4. Further develop skills as a scholar, including developing and sustaining collaborative, interdisciplinary relationships; and 5. Develop a sustainable program of research with funding as an independent nurse scientist. Goals will be accomplished through the following training methods: one-on-one, hands-on experience with mentors; participation in local and national conferences, workshops, and institutes; and formal coursework. Outcomes of training will include published manuscripts relevant to the application topic, presentations at local and national conferences, and an NIH R01 submission. The candidate will apply skills obtained during training to the conduct of a pilot study to assess the feasibility of an mHealth intervention for facilitating self-management behaviors in adolescents with SCD. Estimates of variability for measures of transition readiness, physical and psychological symptoms, healthcare utilization, and quality of life will also be obtained. A key focus of the intervention will be on patient-provider communication effectiveness pertaining to self-management development. Training activities and research will take place at a research-intensive institution with extensive resources devoted to early career investigators, including those offered via the CTSA, such as the Technology Applications Center for Healthful Lifestyles and the Special Populations Program. At the conclusion of this award, the candidate will have strong pilot feasibility data and necessary training to be well-positioned to pursue career goals including NIH- funding and a research trajectory in symptoms self-management.