Measuring participation outcomes in rehabilitation medicine

Abstract

We developed the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) to fulfill the need for a generic measurement instrument to assess outcomes of outpatient rehabilitation programmes. The USER-Participation assesses three aspects of participation, thereby measuring both objective and subjective participation. The reproducibility of the USER-Participation was assessed in the heterogeneous sample, with generally satisfactory results. ICC values were good for the Restrictions and Satisfaction scales, and close to satisfactory for the Frequency scale. The SEM values and the SDC/SD at group level were good for all three USER-Participation scales. However, the SDC/SD ratio was not satisfactory at the individual level, which means that at the individual level large score differences are necessary to exceed chance. Responsiveness figures of the USER-Participation were presented for our heterogeneous sample and in another sample, mainly consisting of persons with brain injury or neuromuscular disease, recruited from the outpatient clinic of the University Medical Center Utrecht (UMCU). For the heterogeneous sample, changes of USER-Participation scores between start and completion outpatient rehabilitation were moderate. However, compared to three other participation instruments the USER-Participation Restrictions scale showed similar, the USER-Participation Satisfaction scale showed higher, and the USER-Participation Frequency scale showed less responsiveness. Unravelling these responsiveness outcomes for the different diagnostic groups, we saw major differences between these groups. The UMCU sample showed smaller responsiveness values for both the USER-Participation and the Impact on Participation and Autonomy (IPA) in the UMCU sample. High correlation coefficients between the Satisfaction scale of the USER-Participation and the IPA showed that the concept of autonomy in participation is highly correlated with satisfaction in participation. Furthermore,the USER-Participation showed its applicability as a measure of participation in the persons with stroke. Even though most participants showed relatively good physical recovery, most experienced participation problems.