Testing and Implementation of the Patient-Reported Outcomes Measurement Information System Measures of Pain Intensity, Interference, and Behavior in Routine Clinical Care of Persons with Hemophilia.

项目总结/摘要 血友病是由凝血因子蛋白质的遗传性缺乏引起的，导致自发性和自发性血友病。 创伤性出血出血进入关节和肌肉引起急性疼痛，随着时间的推移反复出血 在大部分患有关节炎的成年人中， 血友病血友病（PWH）患者疼痛的有效管理受到严重限制， 测量疼痛并将此信息纳入血友病临床护理的有效和可靠方法 实践这项研究解决了这一关键障碍，以实现减少贫困的长期目标。 疼痛对威尔斯亲王医院生命的影响。本研究的总体目标是确定患者是否- 报告结局测量信息系统（PROMIS）测量疼痛强度、干扰和 行为是有效和可靠的，用于PWH，并确定影响疼痛实施的因素 血友病治疗中心（HTC）内的测量实践。候选人的近期目标是 这个K23奖，泰勒巴克纳博士，是为了获得新的知识，技能和经验，使他能够 测试现有患者报告结局（PRO）指标的有效性、可靠性和反应性， 人口，设计纵向研究和进行分析的措施，随着时间的推移重复，并研究 将PRO评估纳入临床实践。实现这些目标将支持他的 长期的职业目标是成为领导者，努力改善疼痛评估和管理的方式 在血友病诊所巴克纳博士将在他的支持下完成他的研究和培训目标。 导师：Marilyn Manco-Johnson博士（血友病临床研究），Bryce Reeve博士（心理测量学）， Diane Fairclough（纵向分析）和Jodi Holtrop博士（实施科学）。巴克纳博士的计划 职业发展是由在科罗拉多大学优秀的研究环境增强， 它为初级教师提供了大量的教学和培训机会， 促进向研究职业独立的过渡。医院的设施、临床和研究人员 科罗拉多大学宏达电提供了一个优秀的研究基础设施，也将支持巴克纳博士的 职业发展和研究活动。巴克纳博士的研究旨在评估以下方面：1）可靠性 PROMIS测量PWH疼痛的有效性，2）这些测量的反应性和生态学有效性 3）在诊所及家居进行疼痛评估的可行性及可接受性 在这个人群中。这些目标将通过计算机化的适应性测试来实现， 血友病男性患者PROMIS疼痛测量的截面和纵向研究。通过完成他的 研究和培训的目的，巴克纳博士将推进血友病疼痛评估的科学， 为改善威尔斯亲王医院的临床护理作出重大贡献，同时也获得经验和培训 开始他作为一名独立研究者和血友病结局研究领导者的职业生涯所必需的。

PROJECT SUMMARY/ABSTRACT Hemophilia is caused by an inherited deficiency of clotting factor proteins, leading to both spontaneous and trauma-induced bleeding. Bleeding into joints and muscles causes acute pain, and over time repeated bleeds into joints results in arthropathy, physical disability, and chronic pain in a large proportion of adults with hemophilia. Effective management of pain in persons with hemophilia (PWH) is severely limited due to lack of valid and reliable methods for measuring pain and incorporating this information into hemophilia clinical care practices. This study addresses this critical barrier to progress toward the long-term goal of reducing the impact of pain on the lives of PWH. The overall objectives of this study are to determine whether Patient- Reported Outcomes Measurement Information System (PROMIS) measures of pain intensity, interference, and behavior are valid and reliable for use in PWH and to identify factors that affect implementation of pain measurement practices within hemophilia treatment centers (HTCs). The immediate goals of the candidate for this K23 award, Dr. Tyler Buckner, are to obtain new knowledge, skills, and experience that will allow him to test the validity, reliability, and responsiveness of existing patient-reported outcome (PRO) measures in special populations, design longitudinal studies and conduct analyses of measures repeated over time, and study the implementation of incorporating PRO assessments into clinical practice. Achieving these goals will support his long term career goal of becoming a leader in the effort to improve the way that pain is assessed and managed in the hemophilia clinic. Dr. Buckner will accomplish his research and training aims with the support of his mentors, Dr. Marilyn Manco-Johnson (hemophilia clinical research), Dr. Bryce Reeve (psychometrics), Dr. Diane Fairclough (longitudinal analysis), and Dr. Jodi Holtrop (implementation science). Dr. Buckner's plan for career development is enhanced by the outstanding research environment at the University of Colorado, which provides junior faculty members with numerous didactic and training opportunities designed specifically to facilitate the transition to research career independence. The facilities and clinical and research staff of the University of Colorado HTC provide an outstanding research infrastructure that will also support Dr. Buckner's career development and research activities. Dr. Buckner's research aims to assess the following: 1) reliability and validity of PROMIS measures of pain in PWH, 2) responsiveness and ecological validity of these measures in PWH, and 3) feasibility and acceptability of implementing in-clinic and at-home pain assessments in this population. These aims will be accomplished using computerized adaptive tests to conduct both cross- sectional and longitudinal studies of the PROMIS pain measures in men with hemophilia. By completing his research and training aims, Dr. Buckner will advance the science of pain assessment in hemophilia and make a significant contribution to improving the clinical care of PWH, while also obtaining experience and training necessary to begin his career as an independent investigator and leader in hemophilia outcomes research.