“How involved do you feel?” The PILS-Stroke questionnaire: a Rasch-built measure of social participation after stroke

Introduction Advances in acute stroke management have increased the number of individuals living with long-term disabilities, presenting challenges in maintaining prior levels of participation in life situations. Return to active participation can be seen as the goal of rehabilitation, given its clear impact on patients‘ quality of life. In this study, we aimed to develop the Participation in Life Situations-Stroke (PILS-Stroke) questionnaire, a self-reported Rasch-built tool for measuring patients' social involvement in meaningful life situations. Methods We assembled a 72-item experimental version of PILS-Stroke, which was grounded on patients' and experts' perspectives via an initial item content review followed by item relevance/comprehensibility assessment. We then administered the questionnaire to 105 post-stroke individuals (58% males; mean ± SD: 62 ± 14 years) discharged for at least one month from hospital. Participants rated their involvement in life situations using a 3-point scale (0: “I would like to, but I don't get involved”; 1: “I get involved a little”; 2: “I get involved a lot”; ?: “I don't know/I don't want to get involved”). The responses were analyzed using the Rasch measurement model (RUMM2030+ software) to select the items presenting the best psychometric properties, resulting in an objective and unidimensional measurement tool. Construct validity was assessed using ten clinical measures covering International Classification of Functioning, Disability, and Health (ICF) domains (body functions, activities, participation). Results The final 38-item PILS-Stroke demonstrated good reliability Person Separation Index (PSI) = 0.89 and defined a unidimensional and linear scale for measuring stroke patients' social participation. There was a high correlation between social participation with satisfaction regarding activities/participation (SATIS-Stroke, r s = 0.7, P 0.001) and weak-to-moderate correlation with performance of motor activities (ACTIVLIM-CS, ABILHAND-CS, ABILOCO-CS; 0.20 ≤ r s ≤ 0.39, P 0.049) and certain psychological indicators (depression HADS, r s = −0.45, P 0.001; confidence CaSM, r s = 0.47, P 0.001). Conclusions PILS-Stroke is a valid and reliable unidimensional tool specifically developed to measure stroke patients' social involvement in life situations. Its psychometric properties show promising potential for monitoring patients' social participation and quantifying the effectiveness of rehabilitation programs promoting their social inclusion.