Shared Decision Making In Pediatric Chronic Conditions: Biologics in IBD and JIA

儿科慢性病的共同决策：IBD 和 JIA 的生物制剂

• 批准号: 8898164
• 负责人: Ellen A Lipstein
• 金额: $ 13.15万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-08-15 至 2016-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8898164
• 关键词: Academy; Active Learning; Address; Adolescent Medicine; Adult; American; Area; Award; Benefits and Risks; Caring; Child; Child Care; Child health care; Childhood; Chronic; Chronic Childhood Arthritis; Chronic Disease; Clinical; Collaborations; Complex; Data; Decision Making; Decision Support Model; Development; Development Plans; Disease; Disease Progression; Distress; Education; Ensure; Environment; Evidence based treatment; Exercise; Faculty; Family; Family Process; Fellowship; Foundations; Future; Gastroenterology; Goals; Grant; Health Services Research; Healthcare; Healthy People 2020; Inflammatory Bowel Diseases; Institute of Medicine (U.S.); Institution; Intervention; Interview; K-Series Research Career Programs; Knowledge; Lead; Learning; Lip structure; Literature; Medical; Medical center; Mentors; Mentorship; Methods; Modeling; Outcome; Parents; Pediatric Hospitals; Pediatrics; Physicians; Positioning Attribute; Primary Health Care; Process; Provider; Proxy; Public Health; Quality of life; Recommendation; Recurrence; Regrets; Reporting; Research; Research Activity; Research Personnel; Research Training; Resources; Rheumatology; Risk; Stress; Structure; Study models; Surveys; Symptoms; Testing; Time; Training; Training Activity; Tumor Necrosis Factor-alpha; Universities; Work; Writing; base; career; career development; clinical application; clinical practice; design; disorder control; experience; family structure; health care service utilization; improved; inhibitor/antagonist; innovation; interest; member; patient oriented; patient population; pediatrician; preference; professor; prospective; prototype; psychosocial; research and development; shared decision making; skills; theories; tool; ward

DESCRIPTION (provided by applicant): Ellen Lipstein, MD, MPH is a primary care pediatrician whose overarching career goal is to improve outcomes for children with chronic conditions through fundamental changes in how families and care providers work to- gether to make difficult treatment decisions. The research she proposes here uses the decision to initiate treatment with tumor necrosis factor-� inhibitors (TNF�i) as a model of complex pediatric treatment decisions. This decision, which occurs in both inflammatory bowel disease (IBD) and juvenile idiopathic arthritis (JIA), is an ideal model of complex pediatric decisions due to significant trade-offs between disease and treatment risks, limited data regarding the ideal timing of treatment, and the opportunity to compare the decision in two different conditions. Candidate: Dr. Lipstein is an Assistant Professor of Pediatrics in the Center for Innovation in Chronic Disease Care within the Division of Adolescent Medicine at Cincinnati Children's Hospital Medical Center. She com- pleted a Master's in Public Health as part of her fellowship in pediatric health services research. Using that ini- tial training, she has conducted multiple studies focused on parents' preferences in pediatric health care and on health care utilization. The proposed K23 career development plan will build upon her fellowship training and early career development to focus on three areas that require additional training to enhance her trajectory toward becoming an independent investigator: 1) Medical decision making in pediatric chronic disease; 2) De- cision aid development and implementation; and 3) Advanced methodologic skills in qualitative, survey, and trials research. Dr. Lipstein proposes training activities that include coursework, seminars and experiential learning to enable her to gain the necessary skills for research and development of decision support interven- tions in pediatric chronic conditions. Mentors/Environment: Dr. Lipstein and her primary mentor, Maria Britto, MD, MPH, have assembled a strong team of co-mentors and advisors to guide Dr. Lipstein through the proposed training and research activities. The proposed career development plan utilizes the intellectual resources available through the University of Cincinnati and Cincinnati Children's Hospital, as well as nationally recognized seminars and courses when op- timal training is not available locally. As an institution Cincinnati Children's Hospital is committed to supporting junir faculty members through internal grants, administrative support and structured opportunities for faculty networking and education. Additionally, the divisions of gastroenterology and rheumatology, where Dr. Lip- stein's research will be conducted and from which her co-mentors are drawn, are each leaders in their respec- tive fields and provide key opportunities for understanding the context of decision making in pediatric chronic conditions. The two divisions also provide large patient populations allowing for the conduct of the proposed research. Research: Understanding the decision process and improving family decision making are key to goals of the Institute of Medicine, American Academy of Pediatrics and Healthy People 2020. However, to achieve these goals, pediatric decision-making research must move beyond retrospective and cross-sectional work and to- wards a detailed understanding of the decision-making process and theory-driven interventions. This proposal will begin to fill the gap, provide the needed prospective data and produce information and interventions that are readily applicable to clinical practice. Aim 1 will use innovative video observation and interviews to under- stand the current, longitudinal decision process for families making decisions about TNF�i. Aim 2 will identify potentially modifiable barriers to and facilitators of high quality deciion making. Aim 3 will use the results of the prior aims to improve decision making about TNF�i treatment by developing and pilot testing a decision sup- port intervention that addresses key modifiable aspects of decision making. The development of such decision support may improve the timeliness of decision making, thus leading to decreased delays in treatment and more rapid disease control. If parents are able to make high-quality decisions with less decisional regret, fami- lies will likely experience improved care, less parental stress associated with the decision and better family quality of life. Summary: The proposed innovative collaboration between general pediatrics, rheumatology and gastroenter- ology will allow for a full understanding of the decision context and maximize the clinical applicability and future implementation of decision support interventions. Dr. Lipstein's research and clinical training, pilot work inves- tigating ths decision and committed, experienced mentorship team make her ideally suited to pursue this line of research. This award will provide her with the training and research needed to be successful in a future, large-scale trial of decision support for families making decisions about TNF�i treatment in IBD and JIA. Fur- thermore, this career development award will facilitate Dr. Lipstein's development into a nationally-recognized independent investigator and leader conducting research that improves the decision making process related to treatments for children with chronic conditions.

描述(申请人提供)：Ellen Lipstein，医学博士，公共卫生硕士，是一名初级保健儿科医生，其首要职业目标是通过从根本上改变家庭和护理提供者相互合作的方式来改善患有慢性病的儿童的预后，以做出困难的治疗决定。她在这里提出的研究使用启动肿瘤坏死因子-�抑制剂(肿瘤坏死因子�I)治疗的决定作为复杂的儿科治疗决定的模型。这一决定同时发生在炎症性肠病(IBD)和幼年特发性关节炎(JIA)中，是复杂儿科决定的理想模型，原因是疾病和治疗风险之间的重大权衡，关于理想治疗时机的有限数据，以及在两种不同条件下比较决定的机会。候选人：利普斯坦博士是辛辛那提儿童医院医学中心青少年医学部慢性病护理创新中心的儿科学助理教授。作为儿科健康服务研究的一部分，她完成了公共卫生硕士学位。利用这种初步培训，她进行了多项研究，重点是父母在儿科保健方面的偏好和卫生保健的利用情况。拟议的K23职业发展计划将以她的团契培训和早期职业发展为基础，专注于三个需要额外培训的领域，以增强她成为独立研究员的轨迹：1)儿科慢性疾病的医疗决策；2)决策辅助开发和实施；以及3)定性、调查和试验研究方面的高级方法技能。利普斯坦博士建议培训活动包括课程作业、研讨会和体验式学习，使她能够获得必要的技能，以研究和开发儿科慢性疾病的决策支持干预。导师/环境：利普斯坦博士和她的主要导师、医学博士、公共卫生硕士玛丽亚·布里托组建了一个由共同导师和顾问组成的强大团队，指导利普斯坦博士完成拟议的培训和研究活动。拟议的职业发展计划利用了辛辛那提大学和辛辛那提儿童基金会提供的智力资源。 在当地没有最佳培训的情况下，还可以举办国家认可的研讨会和课程。作为一家机构，辛辛那提儿童医院致力于通过内部拨款、行政支持以及有组织的教职员工网络和教育机会来支持JUNIR教职员工。此外，胃肠科和风湿科都是各自领域的领导者，为理解儿科慢性病的决策背景提供了关键机会。利普斯坦博士的研究将在那里进行，她的合作导师也是从那里获得的。这两个部门还提供了大量的患者群体，以便进行拟议的研究。研究：了解决策过程和改善家庭决策是美国儿科学会医学研究所和健康人2020年目标的关键。然而，为了实现这些目标，儿科决策研究必须超越回顾和横断面工作，转向对决策过程和理论驱动的干预的详细理解。这项建议将开始填补这一空白，提供所需的前瞻性数据，并产生随时适用于临床实践的信息和干预措施。Aim 1将使用创新的视频观察和访谈来了解当前家庭做出关于肿瘤坏死因子�I的决策的纵向决策过程。Aim 2将确定高质量决策的潜在可修改障碍和促进者。Aim 3将利用先前AIMS的结果，通过开发和试点测试一种针对决策制定的关键可修改方面的决策支持干预措施，来改进关于肿瘤坏死因子�I治疗的决策。这种决策支持的发展可能会提高决策的及时性，从而减少治疗延误和更快地控制疾病。如果父母能够做出高质量的决定，而不那么后悔，家庭很可能会经历更好的照顾，更少的与决定相关的父母压力，以及更好的家庭生活质量。摘要：拟议的普通儿科、风湿学和胃肠病学之间的创新合作将使人们能够充分了解决策背景，并最大限度地提高决策支持干预措施的临床适用性和未来实施。利普斯坦博士的研究和临床培训、对这一决定的试点工作以及尽职尽责、经验丰富的指导团队使她成为从事这一研究的理想人选。这一奖项将为她提供在未来成功所需的培训和研究，这项大规模试验将为家庭做出关于炎症性肠病和日本血友病患者肿瘤坏死因子�I治疗的决策支持。此外，这一职业发展奖将促进利普斯坦博士发展成为全国公认的独立调查者和领导者，进行改善与慢性病儿童治疗相关的决策过程的研究。