Patient-Provider Interventions to Improve Transition to Adult Care in SCD

患者提供干预以改善 SCD 向成人护理的过渡

• 批准号: 8704356
• 负责人: Lori E Crosby
• 金额: $ 37.94万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-18 至 2015-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8704356
• 关键词: Adolescence; Adolescent and Young Adult; Adult; Age; Area; Award; Behavioral; Biometry; Cardiac; Caring; Child; Childhood; Chronic Disease; Clinical; Clinical Investigator; Clinical Research; Clinical effectiveness; Collaborations; Communication; Counseling; Data; Development; Development Plans; Disease Outcome; Drops; Education; Effectiveness; Electronic Health Record; Electronics; Ensure; Epidemiology; Ethics; Fatigue; Fostering; Goals; Health; Health Care Costs; Health Information System; Health Personnel; Health Policy; Health Services; Health Status; Healthcare; Healthcare Systems; Heart Diseases; Hematological Disease; Hemoglobinopathies; Hospitalization; Infarction; Institution; Intervention; Knowledge; Leadership; Literature; Lung; Lung diseases; Medical; Mentorship; Methods; Morbidity - disease rate; Motivation; Multi-Institutional Clinical Trial; National Heart, Lung, and Blood Institute; Neurocognitive Deficit; Online Systems; Organ; Outcome; Outcomes and Health Services Research; Pain; Pain interference; Parents; Participant; Patient Care; Patients; Population; Provider; Public Health; Qualitative Research; Quality of life; Research; Research Methodology; Research Personnel; Role; Sampling; Self Management; Sickle Cell; Sickle Cell Anemia; System; Technology; Time; Training; Training Programs; Translating; Visit; Work; aged; base; bone; career; career development; clinical application; clinical care; clinical epidemiology; clinical practice; design; evidence base; experience; follow-up; health care delivery; implementation research; improved; innovation; investigator training; medical complication; meetings; mortality; motivational enhancement therapy; novel; post intervention; programs; provider intervention; research study; responsible research conduct; satisfaction; skills; statistics; tool; treatment adherence; user-friendly; young adult

DESCRIPTION (provided by applicant): Mortality rates for young adults with sickle cell disease (SCD) are alarming ranging from 6 to 20 percent within 10 years of transitioning to the adult healthcare system 21-22. The Specific Aims of this K07 award are to: (1a) design, optimize, and pilot a self-management intervention for providers (i.e. evidence-based care strategies including motivational interviewing, behavioral change counseling, etc.) that will enhance patient interactions, education and motivation; (1b) design, optimize and pilot a chronic disease self-management intervention for SCD patients age 16-24 (critical ages when patients are transitioning or newly transitioned to adult care) to improve health outcomes (e.g. treatment adherence, pain interference, fatigue, etc.); and (2) to design, refine, and launch an SCD-specific patient-parent portal that integrates with the current electronic health record, MyChart portion of EPIC, and facilitates patient-provider and provider-provider coordination, and 3) prepare the Candidate to be a leader in SCD health services and implementation research. The Candidate's programmatic line of research is in innovation in chronic disease care including transforming the healthcare delivery system for patients with SCD. The candidates' immediate career goal is to establish herself as an independent investigator developing and piloting clinical support tools (i.e. patient- provider self-management interventions and a web-based patient/parent portal) to aid patients with SCD in the transition to the adult healthcare system. The Career Development Plan includes in depth mentorship, formal coursework, and seminars in leadership in 4 focus areas: 1) knowledge of clinical epidemiology to improve understanding of clinical factors related to increased morbidity in SCD; 2) health services and implementation research skills; 3) advanced methods for research methods and biostatistics; and 4) training in the responsible conduct of research. Cincinnati Children's provides an ideal setting for this award because of the strong institutional support for health services and outcomes research, nationally recognized Comprehensive Sickle Cell, Clinical Effectiveness and Health Policy, and Treatment Adherence and Self-Management Centers, advanced electronic health information systems, and a commitment of the Institution to "change the outcomes" for SCD patients transitioning to adult care.

描述（由申请人提供）：在过渡到成人医疗保健系统 21-22 的 10 年内，患有镰状细胞病 (SCD) 的年轻人的死亡率高达 6% 至 20%，令人震惊。该 K07 奖项的具体目标是：(1a) 为提供者设计、优化和试点自我管理干预措施（即基于证据的护理策略，包括动机访谈、行为改变咨询等），以增强患者互动，教育和动机； (1b) 为 16-24 岁的 SCD 患者（患者正在过渡或刚刚过渡到成人护理的关键年龄）设计、优化和试点慢性病自我管理干预措施，以改善健康结果（例如治疗依从性、疼痛干扰、疲劳、 ETC。）; (2) 设计、完善和启动 SCD 特定的患者家长门户，该门户与当前的电子健康记录、EPIC 的 MyChart 部分集成，并促进患者与提供者以及提供者与提供者之间的协调，以及 3) 准备候选人成为 SCD 卫生服务和实施研究的领导者。该候选人的计划研究方向是慢性病护理创新，包括改变 SCD 患者的医疗保健服务系统。候选人的近期职业目标是成为一名独立研究者，开发和试点临床支持工具（即患者提供者自我管理干预措施和基于网络的患者/家长门户），以帮助 SCD 患者向成人过渡。医疗保健系统。职业发展计划包括 4 个重点领域的深入指导、正式课程和领导力研讨会：1) 临床流行病学知识，以提高对与 SCD 发病率增加相关的临床因素的理解； 2）卫生服务和实施研究技能； 3）先进的研究方法和生物统计学方法； 4) 负责任地进行研究的培训。辛辛那提儿童医院为该奖项提供了理想的环境，因为它对健康服务和结果研究提供强有力的机构支持、全国公认的综合镰状细胞、临床有效性和健康政策、治疗依从性和自我管理中心、先进的电子健康信息系统以及该机构承诺“改变 SCD 患者过渡到成人护理的结果”。

项目成果

A biopsychosocial model for the management of patients with sickle-cell disease transitioning to adult medical care.

用于管理镰状细胞病患者过渡到成人医疗护理的生物心理社会模型。

• 发表时间: 2015-04
• 影响因子: 3.8
• 作者: Crosby, Lori E;Quinn, Charles T;Kalinyak, Karen A
• 通讯作者: Kalinyak, Karen A

Acceptability and Feasibility of a Disease-specific Patient Portal in Adolescents With Sickle Cell Disease.

镰状细胞病青少年特定疾病患者门户的可接受性和可行性。

• 发表时间: 2019
• 作者: Kidwell, Katherine M;Peugh, James;Westcott, Emilie;Nwankwo, Cara;Britto, Maria T;Quinn, Charles T;Crosby, Lori E
• 通讯作者: Crosby, Lori E

School Performance and Disease Interference in Adolescents with Sickle Cell Disease.

镰状细胞病青少年的学校表现和疾病干扰。

• 发表时间: 2015
• 作者: Crosby, Lori E;Joffe, Naomi E;Irwin, Mary Kay;Strong, Heather;Peugh, James;Shook, Lisa;Kalinyak, Karen A;Mitchell, Monica J
• 通讯作者: Mitchell, Monica J

Feasibility of Electronic Medication Monitoring Among Adolescents and Emerging Adults with Sickle Cell Disease.

对患有镰状细胞病的青少年和新兴成人进行电子药物监测的可行性。

• 发表时间: 2023
• 作者: Hildenbrand, Aimee K;Kidwell, Katherine M;McGrady, Meghan E;Mara, Constance A;Quinn, Charles T;Crosby, Lori E
• 通讯作者: Crosby, Lori E

A preliminary investigation of the psychometric properties of PROMIS® scales in emerging adults with sickle cell disease.

对患有镰状细胞病的新生成年人的 PROMIS® 量表的心理测量特性进行初步调查。

• 发表时间: 2019-05
• 作者: Hildenbrand, Aimee K;Quinn, Charles T;Mara, Constance A;Peugh, James L;McTate, Emily A;Britto, Maria T;Crosby, Lori E
• 通讯作者: Crosby, Lori E