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

这个K23的长期目标：指导以患者为导向的研究职业发展奖是 把候选人香农菲利普斯博士培养成一名独立调查员，并让她做好领导大规模调查的准备， 严格设计的随机临床试验，目的是改善症状自我管理， 患有镰状细胞病（SCD）的儿童、青少年和年轻人及其家人。SCD患者 经常生活在沉重的症状，如急性和慢性疼痛和疲劳。此外，作为儿童， SCD过渡到青春期和成年期，合并症和医疗保健利用率增加。 可扩展的自我管理干预措施，促进预防性护理和减少合并症， 改善症状和自我管理，生活质量和医疗保健利用，符合 国家护理研究所的使命。拟议的职业发展计划是 与初级导师Teresa Kelechi博士和候选人的专家导师团队一起开发， 信息、通信、技术、统计和特殊人群的慢性病。该计划建立在 候选人以前的临床护理，教育和研究经验，以完成以下工作 具体培训目标：1.发展设计干预措施的专业知识，以促进症状和自我- 管理; 2.获得进行严格的随机临床试验的技能和知识; 3.增强 应用移动健康策略以覆盖特殊人群的知识; 4.进一步发展作为学者的技能， 包括发展和维持合作，跨学科的关系;和5。发展可持续的 作为一名独立的护士科学家，目标将通过以下途径实现： 以下培训方法：与导师一对一、亲身体验;参加当地和 全国性会议、研讨会和机构;以及正式课程。培训成果将包括 发表了与应用主题相关的手稿，在地方和国家会议上的演讲，以及 NIH R 01提交。候选人将应用培训期间获得的技能进行试点研究， 评估移动健康干预促进青少年自我管理行为的可行性， SCD。过渡准备、身体和心理症状测量的变异性估计， 医疗保健利用率和生活质量也将获得。干预的一个关键重点将是 与自我管理发展相关的患者-提供者沟通有效性。培训活动 研究将在一个研究密集型机构进行，该机构拥有用于早期职业生涯的广泛资源 调查人员，包括那些通过CTSA提供的，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，以充分定位，以追求职业目标，包括国家卫生研究院- 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.