Advancing measurement of physical function in upper limb amputation

虽然改善身体功能(PF)是假体康复的主要目标，但测量PF 使用上肢假肢的人由于现有措施的限制和 在常规护理环境中实施标准化数据收集。在过去的十年里，我的研究团队 测试、开发和改进患者报告的结果衡量标准(PROM)以及基于绩效的 上肢截肢(ULA)的PF测量。我们开发了三个有希望的条件特定的PF ULA的测量，假体使用者的上肢功能量表(UEFS-P)，一个定制的13项 患者报告结果测量信息系统(PROIS)上肢的版本 测量(PROIS-13 UE截肢特定样本校准计分AMP)和活动测量 上肢截肢(AM-ULA)。我们还评估了患者的几个版本的缩写表格(SF)- 报告结果测量信息系统上肢测量(PROMIS-UE SF)。这部作品 已确定应解决的重要差距，以确保措施可靠、有效和 对患有ULA的女性和男性的变化做出反应。 我们验证了UEFS-P的已知团体效度和重测信度(包括 单手和双手任务量表)。然而，单手任务量表的人信度较差 以及相当大的地板效应。此外，双手任务量表时间长，负担重。这个 PROMIS-13 UE AMP评分采用截肢特异性校正，其可靠性高于PROMIS-13。 UE SF测量使用通用人口校准进行评分。然而，它无法检测到在 相同截肢节段的假肢使用者和非假肢使用者之间的分数，限制了它对 通过假体使用和评估假体康复效果的比较。到目前为止，UEFS-P和 PROMIS-13 UE AMP是通过电话管理的，尽管其他管理模式是 最好在临床环境中使用。支持其他管理模式的等价性和可行性的数据是 需要的。 这项研究的长期目标是为临床医生和研究人员提供评估和 通过ULA满足女性和男性的需求。这项建议的理由是有效、可靠和 需要响应性的PF措施来检测性别差异，准确跟踪随时间推移的功能，以及 识别假体特性和假体训练的效果。这项建议的总体目标是 通过改进UEFS-P和自定义Promis-UE SF来改进ULA中的PF测量，以 提供工具，促进措施的实施。研究的具体目的是：1)提炼 内容，评估测量性能，提高UEFS-P和自定义Promis-UE SF的实用性；2) 通过给药方式检验改进后的UEFS-P和PROMIS UE SF测量的等价性； 开发临床翻译工具，以促进采用研究措施。 这项研究将推进ULA中PF的最新测量，并提供翻译工具 加快措施的采用，最终推动护理质量和研究设计的改进。这部作品 直接解决退伍军人事务部/国防部确定的上肢截肢康复管理的优先事项 工作组。主要成果包括：1)改进的UEFS-P单手任务量表，提高了信度，2) 简写的UEFS-P双手任务量表，3)改进的特定人群的Promis-UE SF测量，4) UEFS-P和PROMIS-13UE AMP同时效度的证据，5)模式的比较 行政管理，以及6)促进PF措施采用的工具，以便在未来的实施研究中进行测试。 1

Although improving physical function (PF) is a primary goal of prosthetic rehabilitation, measurement of PF in persons using upper limb prostheses is challenging due to limitations of existing measures and challenges in implementing standardized data collection in routine care settings. In the past decade, my research team has tested, developed, and refined patient-reported outcome measures (PROMs) as well as performance-based measures of PF for upper limb amputation (ULA). We developed three promising condition-specific PF measures for ULA, the Upper Extremity Functional Scale for Prosthesis Users (UEFS-P), a custom 13-item version of the Patient-Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Measure (PROMIS-13 UE Amputation sample-specific calibrated scoring AMP) and the Activities Measure for Upper Limb Amputation (AM-ULA). We also evaluated several versions of short forms (SF) of the Patient- Reported Outcomes Measurement Information System upper extremity measure (PROMIS-UE SF). This work has identified important gaps that should be addressed to ensure that measures are reliable, valid, and responsive to change in women and men with ULA. We demonstrated known group validity and test-retest reliability of the UEFS-P (which consists of a One-handed and a Two-handed Task scale). However, the One-handed Task scale had poor person reliability and a substantial floor effect. In addition, the Two-handed Task scale was long and burdensome. The PROMIS-13 UE AMP was scored using amputation-specific calibration and had better reliability than PROMIS- UE SF measures scored using generic population calibrations. However, it could not detect differences in scores between prosthesis users and non-users at the same amputation level, limiting its usefulness for comparisons by prosthesis use and for evaluating effects of prosthetic rehabilitation. To date, the UEFS-P and PROMIS-13 UE AMP have been administered by telephone, though other modes of administration are preferable in clinical settings. Data to support equivalence and feasibility of other administration modes is needed. The long-term goal of this research is to provide clinicians and researchers with tools to evaluate and address the needs of women and men with ULA. The rationale for this proposal is that valid, reliable, and responsive PF measures are needed to detect disparities by sex, accurately track function over time, and discern effects of prosthesis characteristics and prosthesis training. The overall aim of this proposal is to advance the measurement of PF in ULA by refining the UEFS-P and the custom PROMIS-UE SF as well to provide tools to facilitate implementation of the measures. The specific aims of the study are to: 1) refine content, evaluate measurement properties, and improve utility of the UEFS-P and custom PROMIS-UE SF; 2) test the equivalence of the refined UEFS-P and PROMIS UE SF measures by mode of administration; and 3) develop clinical translation tools to facilitate adoption of study measures. This study will advance state-of-the-art measurement of PF in ULA and provide translational tools to expedite measure adoption, ultimately driving improvements in care quality and research design. This work directly addresses a priority identified by the VA/DoD Management of Upper Limb Amputation Rehabilitation Work Group. Key outcomes include: 1) a refined UEFS-P One-Handed Task scale with improved reliability, 2) a short form UEFS-P Two-Handed task scale, 3) a refined population-specific PROMIS-UE SF measure, 4) evidence of concurrent validity of the UEFS-P and PROMIS-13 UE AMP, 5) comparison of mode of administration, and 6) tools to facilitate PF measure adoption to be tested in a future implementation study. 1