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: 8340485
• 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 2017-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8340485
• 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; Commit; 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. PUBLIC HEALTH RELEVANCE: Family-centered, shared decision making, a priority of Healthy People 2020 and the Institute of Medicine, has the potential to improve outcomes for children with chronic conditions by ensuring they receive evidence-based treatment that also addresses their families' goals and values. This application aims to achieve such shared decision making by examining the current barriers to and facilitators of high-quality decision making and using that new knowledge to design a feasible, acceptable decision support intervention. While aimed at a decision about a specific treatment, the concepts learned through this grant, as well as the career development pursued by the investigator, will be readily applicable to challenging decisions in other pediatric chronic conditions.

描述（由申请人提供）：Ellen Lipstein，医学博士，公共卫生硕士是一名初级保健儿科医生，她的首要职业目标是通过从根本上改变家庭和护理提供者如何共同做出困难的治疗决定来改善患有慢性病的儿童的预后。她在这里提出的研究将决定启动肿瘤坏死因子抑制剂（TNF）治疗作为复杂儿科治疗决策的模型。炎症性肠病（IBD）和青少年特发性关节炎（JIA）都有这种情况，由于疾病和治疗风险之间的重大权衡，关于理想治疗时机的数据有限，以及在两种不同情况下比较决策的机会，这种决策是复杂儿科决策的理想模型。候选人：Lipstein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助理教授。她完成了公共卫生硕士学位，作为儿科卫生服务研究的一部分。利用这些初步培训，她开展了多项研究，重点关注父母对儿科医疗保健和医疗保健利用的偏好。拟议的K23职业发展计划将以她的奖学金培训和早期职业发展为基础，重点关注三个需要额外培训的领域，以增强她成为独立研究者的轨迹：1)儿科慢性疾病的医疗决策；2)决策援助的制定和实施；3)在定性、调查和试验研究方面的高级方法技能。Lipstein博士建议培训活动包括课程、研讨会和体验式学习，使她能够获得必要的技能，用于儿科慢性病决策支持干预的研究和开发。导师/环境：Lipstein博士和她的主要导师Maria Britto（医学博士、公共卫生硕士）组建了一个强大的共同导师和顾问团队，指导Lipstein博士完成拟议的培训和研究活动。提出的职业发展计划利用了辛辛那提大学和辛辛那提儿童医院提供的智力资源