Patient-Centered Outcomes in Neurologic Disease. Abstract, Executive Summary and211 Final Report

摘要

Patients can contribute important data about their quality of life (QOL),211u001eespecially when it concerns the efficacy of new treatments and the quality of 211u001etheir health care. The purpose of this project was to develop a new patient-211u001ecentered outcomes methodology for evaluating treatments in chronic neurologic 211u001ediseases using multiple sclerosis (MS) as a model. This methodology, the Extended 211u001eQ-TWIST integrates the perspective of the patient, the provider, and social cost 211u001ein a single analysis. Two new measures of neurologic function and two approaches 211u001eto patient preference assessment were psychometrically evaluated. Additionally, 211u001etheoretical and methodological development focused on response shift phenomena, 211u001ean emerging construct in QOL research which refers to the idea that when people 211u001eexperience changes in health state, they may change their internal standards, 211u001etheir values, or their conceptualization of QOL. It has important implications 211u001efor clinical research. In response to difficulties experienced in implementing an 211u001eExtended Q-TWIST evaluation of a clinical intervention, a qualitative study was 211u001eimplemented to identify barriers which prevent African Americans from 211u001eparticipating in medical and health services research.