Using the patient generated index to evaluate response shift post-stroke

Background: Individualized measures allow for the assessment of health-related quality of life (HRQL) based on areas that are relevant to the person and may prove to be useful for evaluating response shift (reconceptualization of HRQL and change in values). Objective: The objective of this study was to assess reconceptualization of HRQL and change of individual values among persons with stroke during the first six months of recovery. Methods: The data collection for this study was incorporated into a randomized trial of acute post-stroke care. Individualized HRQL was evaluated at 6 and 24 weeks post-stroke using the Patient Generated Index (PGI). At 24 weeks a semi-structured interview was administered to assess whether verbalizations given by subjects indicated that they had experienced a response shift. Results: Ninety two subjects (61%) had complete PGI information at the 6- and 24-week evaluations, and of these, 46 completed the semi-structured interview. Between the 6- and 24-week evaluations, the domains selected were: the same for 10 (11%) subjects, reduced for 27 (29%), expanded for 11 (12%), and completely different for 44 (48%) subjects. Twenty eight percent (n=13) of subjects recovering from stroke experienced a response shift as evidenced by the semi-structured interviews. Conclusion: The PGI provides valuable information regarding changes in person's conceptualization of HRQL and values, but the feasibility of using an individualized measure during the first six months post-stroke is limited by the added complexity of completing and interpreting such a measure.