Advancing measurement of physical function in upper limb amputation

Providence Va Medical Center, Providence RI

Investigators

Abstract

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