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

SMYLS：针对患有镰状细胞病的青少年的自我管理计划

基本信息

批准号：
10112313
负责人：
Shannon M. Phillips
金额：
$ 14.2万
依托单位：
MEDICAL UNIVERSITY OF SOUTH CAROLINA
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-04-18 至 2022-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10112313
关键词：
Accident and Emergency department Acute Pain Address Adherence Adolescence Adolescent Adolescent and Young Adult Adoption Adult Age Appointment Award Behavior Caregivers Caring Child Childhood Chronic Clinic Clinical Clinical Nursing Communication Data Development Development Plans Disease Management Educational Materials Educational workshop Effectiveness Effectiveness of Interventions Enrollment Face Family Fatigue Feasibility Studies Frequencies Funding Goals Health Personnel Healthcare Activity Home Hospital Departments Individual Institutes Institution Intervention Knowledge Lead Learning Life Style Longevity Managed Care Manuscripts Measures Mediation Mentored Patient-Oriented Research Career Development Award Mentors Mentorship Methods Mission Monitor National Institute of Nursing Research Nurses Online Systems Organ Outcome Pain Parents Participant Patients Pattern Pharmaceutical Preparations Pilot Projects Population Programs Positioning Attribute Preventive care Process Program Sustainability Provider Publishing Quality of life Randomized Clinical Trials Reach, Effectiveness, Adoption, Implementation, and Maintenance Readiness Research Research Personnel Resources Scientist Self Care Self Management Sickle Cell Sickle Cell Anemia Special Population Surveys Symptoms Technology Testing Time Training Training Activity United States National Institutes of Health Visit Work Youth adverse outcome aged behavioral outcome burden of illness career career development chronic pain comorbidity design effectiveness testing experience health care service utilization health communication hospital utilization implementation process improved improved outcome mHealth patient-clinician communication physical symptom post intervention primary caregiver psychological symptom recruit satisfaction screening self-management program skills smartphone Application statistics symposium symptom management symptom self management symptomatic improvement therapy design tool

项目摘要

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.

K23：以患者为导向的研究职业发展奖的长期目标是将候选人香农·菲利普斯博士培养成一名独立调查员，并让她做好领导大型、严格设计的随机临床试验，旨在改善患者的症状自我管理患有镰状细胞病 (SCD) 的儿童、青少年和年轻人及其家人。患有 SCD 的个人经常伴随着沉重的症状，例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都会增加。可扩展的自我管理干预措施对于促进预防性护理和减少合并症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，与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 博士以及候选人的专家导师团队共同开发通信、技术、统计和特殊人群的慢性病。该计划建立在候选人之前的临床护理、教育和研究经验，以完成以下任务培训具体目标： 1. 培养设计干预措施的专业知识，以促进症状和自我缓解管理; 2. 获得进行严格的随机临床试验的技能和知识； 3. 增强了解应用移动医疗战略来接触特殊人群； 4. 进一步发展作为学者的技能，包括发展和维持跨学科的合作关系； 5. 制定可持续的作为独立护士科学家资助的研究计划。目标将通过以下方式实现以下培训方式：与导师一对一的实践经验；参与当地和国家会议、讲习班和机构；和正式的课程作业。培训的成果将包括发表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 R01 提交。候选人将应用在培训期间获得的技能进行试点研究评估移动健康干预措施促进青少年自我管理行为的可行性 SCD。过渡准备程度、身体和心理症状的变异性估计，还将获得医疗保健利用率和生活质量。干预的重点将是与自我管理发展有关的患者与提供者的沟通有效性。培训活动研究将在研究密集型机构进行，该机构拥有专门用于早期职业生涯的大量资源调查员，包括通过 CTSA 提供的调查员，例如健康技术应用中心生活方式和特殊人群计划。在该奖项结束时，候选人将拥有强大的试点可行性数据和必要的培训，以便能够实现职业目标，包括 NIH- 症状自我管理的资金和研究轨迹。